Published 2nd November 2016
We are nearly there, Andreas Pantelli will be running for LUPUS EUROPE in the New York Marathon on 6th November.
You can catch the excitement of the TCS New York City Marathon from anywhere on the planet. In the New York tri-state area, the race broadcasts live on WABC-TV, Channel 7, from 9:00 a.m. to 2:00 p.m. ET. Pre-race coverage starts at 7:00 a.m. The race will also be live on abc7ny.com and via the ABC app. Outside of the tri-state area, live coverage runs from 9:00 a.m. to 12:30 p.m. ET on ESPN2 and via WatchESPN. Additionally, the race will be available in Spanish via ESPN Deportes+. Find out more ways to watch. Download the TCS New York City Marathon Mobile App Powered by Tata Consultancy Services to live-track up to 20 runners, check out the course map, and see the full schedule of race-week events.
For a pre-taster, here are some photos from the Pavillion.
Published 24th October 2016
2 weeks to go, Running for Lupus
Hej, Tere, Hei, Χαιρετώ, Bonjour, Hallo, Helló, Ciao, Olá, Ahoj, Hallå, Hola, Grüezi, Halló, Dia dhuit, Shalom, As-salam alaykom, Buna, Sveiki, Zdravo
Many things have happened since the last blog post. As you can see in the above picture, the t-shirt design has been finalised and ordered for printing. You will see the real thing in the next post. I also received a new US visa to be allowed to enter the country – remember my previous Visa was in the passport that got stolen last month. Additionally, I managed to apply for a replacement South Africa Permit – you see, that was also on the stolen passport! Without that I might not have been allowed to travel outside the country. The most important thing is that I did everything necessary to be able to attend and run in the New York Marathon for Lupus. And here I am, 2 weeks before the race, blogging. My only concern now is my knee injury that doesn’t seem to let go. But I will fight that as well. Also, stay tuned for the next post where I will share how to follow me during the race using a mobile app.
Another interesting update I was told last week is that I was selected to be a flag bearer (for my country – Cyprus) during the New York Marathon opening ceremony on the 4th of November, 2 days before the race. Because of that, Lupus Cyprus has decided to dedicate the Lupus month of October to myself and the effort to raise Lupus awareness. I feel honored to represent my country and show that being a Lupus Warrior doesn’t mean your life goals are put aside.
On different note, the European Society of Cutaneous Lupus Erythematosus e.V. (EUSCLE e.V.) has set up a European survey on sunscreen application in patients with lupus erythematosus. Lupus Europe has been closely involved in this important project. The aim of the observational study “Sunscreens in Patients with Lupus Erythematosus (SmiLE)” is to investigate the type of sunscreen applied by patients with lupus erythematosus and efficacy in daily life. Find more information here, and participate in the survey here.
Last, check out Lupus Europe’s Goodbye post to Würzburg – 2016 Lupus Europe convention here.
Below is my training for the previous 2 weeks and this coming week
Monday 10th: 5km run
Tuesday 11th: rest
Wednesday 12th: 5km run
Thursday 13th: 1km swim
Friday 14th: 20km cycle
Saturday 15th: 5km run
Sunday 16th: 15km run
Monday 17th: rest
Tuesday 18th: 30km cycle
Wednesday 19th: 1km swim
Thursday 20th: rest
Friday 21st: 5km run
Saturday 22nd: 5km run
Sunday 23rd: 10km run, 30km cycle
Monday 24th: 1km swim
Tuesday 25th: 5km run
Wednesday 26th: 10km run
Thursday 27th: 30km cycle
Friday 28th: rest
Saturday 29th: 5km run
Sunday 30th: rest
Published 8th October 2016
Week 24/24 Slovenia, Tečem za lupus
Yes, I am going! At least that’s the current status. I would never have thought of stressing over whether I was going or not going during the last member country’s week, so this week it is – Slovenia – I will be running for. Life is unpredictable and I believe we set our own fate. Lots of things have happened since last week. I managed to apply for a new passport, registered for an appointment at the US Embassy, gave a talk at the annual Lupus convention (online) that took place at Würzburg, Germany and did cross-training in the hope that my knee recovers.
So let’s take things one by one. When I called to ask for the duration needed to get a new passport at the High Commission of Cyprus in South Africa I got the staggering response of 6-9 weeks. Though, I had only 4 weeks before my flight and in addition I needed to apply for a new US Visa since the one I had on my stolen passport is not accepted. I was in hell. To be fair, by speaking to the right people and explaining the situation I got different timelines on issuing the new passport. I was in heaven. I am grateful for the people who are supporting me in this journey through hard times and overcoming adversity, challenges, personal struggles and obstacles.
Last Saturday I had the privileged to participate in the LUPUS EUROPE Convention where I gave a short overview and status of the campaign and answered many questions from the participants, who were from the following countries: Belgium, Denmark, England, Finland, France, Germany, Greece, Italy, Lithuania, Norway, Poland, Portugal, Slovakia, Spain. Sweden and the Netherlands. I just wanted also to say a big THANK YOU for all for your great support and invaluable encouragement.
Today, the 8th Oct. The Slovenian Lupus team is organizing a photographic exhibition in the center of Ljubljana. The event will take place from 09h00 to 13h00. The picture is from last year’s event promoting: “I have rheuma, but …rheuma doesn’t have me”
This week’s training schedule:
Monday 03rd: 2km run, 15km cycle
Tuesday 04th: kick gym class
Wednesday 05th: rest
Thursday 06th: 25 km cycle
Friday 07th: grit gym class
Saturday 08th: cross training – 3km swim, 50km cycle, 5km run
Sunday 09th: rest
Slovenia Lupus Group – Društvo revmatikov Slovenije:
The lupus group in Slovenia is part of a national association of people with rheumatic diseases called Revmatikov Association of Slovenia that was established in 1983. It brings together people with a diagnosis of inflammatory rheumatic diseases, such as rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, Sjogren’s syndrome, Lupus and other inflammatory rheumatic diseases (hereinafter referred to as rheumatism). It is a voluntary, non-profit and independent association seeking solutions to social and health problems of people with rheumatism with the desire to achieve a better quality of their lives. The association is running several social programs to prevent and mitigate the negative impact of the disease and to contribute to better integration in society. Among the most important is the program of rehabilitation and preservation of mental and physical health, which takes place under the supervision of a physiotherapist. The association’s activities also include identifying and meeting the special needs, advocacy and lobbying with government and other relevant institutions in an effort to reduce discrimination and public awareness for accepting diversity.
Contact person: Dominika Naveršnik
Tel.: +38 590 75366
Training during Lithuania’s week and a picture from the Lithuanian lupus group this week, supporting Andreas and working out in their own way.
Will I make it to New York? ..
A few years ago, my car got stolen. That was a bad experience but immediately a bicycle replaced it and friends/family helped on long distances. Overall, it didn’t create any trouble even though I had completely lost my car. Last Friday, – no my car was not found – I was a victim of a robbery again, this time my backpack was stolen from my car while parked. I know, it was a big mistake leaving my backpack in the car boot considering the high crime rates in South Africa. Anyhow, inside the backpack I had my passport – even bigger mistake. So now, one month before travelling to United States, I am passportless and US Visaless – big trouble. After consulting and investigating the options, I am confident I will make it to the US on time for the New York marathon. After all, I have been training the last 7 months and I have got so much support from the campaign – I cannot miss it! I am also realistic and need to be prepared for the worst. Will keep you posted next week.
This week I am running for Lithuania and I am grateful the team there have organized many activities to support the campaign. Lupus warriors from different parts of the country are gathered at Kaunas for iyengar yoga. Additionally, national and local media representatives are invited for press releases. Lastly, Lupus Lithuania representative Daiva is giving 2 interviews on her story – how important it is to keep moving after diagnosed with Lupus. – see her doing Yoga.
Lupus Europe is holding this year’s convention in Würzburg, Germany this week and also celebrates–ing Lupus Germany’s 30-year anniversary. The theme for this year’s convention where most of country members have representative is “Treatment”. The programme includes a series of great speakers, interactive workshops and sharing sessions with the ultimate goal for the participants to go back to their respective countries full of energy, knowledge and ideas, to better help people living with lupus in Europe.
This week’s training schedule:
Monday 19th: rest
Tuesday 20th: rest
Wednesday 21st: 7km run
Thursday 29th: 9km run
Friday 30th: rest
Saturday 01st: 21km run
Sunday 02nd: rest
Lupus Lithuania – Lupus LT
A picture from Andreas’ week with Romania
Published 23rd September 2016
Romania Lupus Association – Asociatiei Lupus Romania
In Romania, more than 9,000 people have lupus. There is a great website in Romanian, www.infolupus.ro, where you can find out more about Lupus. Patients, family and friends can also benefit from a free guide “25 answers we look for when we have lupus” , designed to provide support in controlling the disease, about which we know very little. The guide can be downloaded on http://apaa.ro/Afectiuni/25raspunsuri.pdf and includes information designed to help patients understand their illness and find answers to the toughest questions.
Tel.: +40 770 755 062
Running for Israel
Published 15th September 2016
Israel 21/24 Week, רצים למען זאבת – معا ضد الذئبة الحمراء
Shalom – As-salam alaykom
Schools are back or going back all over Europe. Let’s educate you a bit on the two official languages of Israel. Firstly, those languages are written from right to left. Secondly, for those who find it difficult to read Hebrew and/or Arabic, let me help you read this week’s title. The first from the right is Hebrew and it’s pronounced Ratzim lema’an Za’e’vet which means “Running for Lupus”. The next, last from the right is Arabic and it’s pronounced as Maan Ded Alzeaba Al Hamraa which means “Together against Lupus”.
Remember last week I was writing about focusing on Paralympic athletes’ abilities and celebrating their extraordinary skills? Let me tell you a story about Abdellatif Baka. He is a visually impaired runner and recently crossed the finish line first in the men’s 1,500-metre race, winning the gold medal. His time: 3:48.29. He finished 1.7 seconds faster than recent Olympic champion Matthew Centrowitz in the same race. Do you consider this extraordinary? Then how about the fact that, along with Abdellatif, three other Paralympic athletes ran faster than the man who received the gold medal three weeks earlier? So, Abdellatif Baka from Algeria not only set a new Paralympic world record, but stands as the fastest 1500m time recorded by an able-bodied or disabled athlete in Rio over both the Olympic and Paralympic Games.
As you know, we are now in the last weeks of training before the big day of the marathon, 6th of November. Last week I didn’t do much running because of the knee injury I have. I spent it mostly recovering and resting. This week, I am getting back slowly slowly to the training and hoping to run without any problems cropping up. I will probably schedule to see an orthopedist soon. I can’t afford to lose more training time.
This week’s training schedule:
Monday 12th: 1000m swim
Tuesday 13th: rest
Wednesday 14th: 11km run
Thursday 15th: swim 1000m
Friday 16th: 10km run
Saturday 17th: 5km park run
Sunday 18th: 10km run
Lupus Association of Israel – currently inactive:
Tel.: +972-(0)3-677-346; +972-(0)52-403-7575
A picture from the week with Ireland
Published 8th September 2016
Week 20/24 Ireland, Ag Rith Do Lupus
I was very excited last week. It was the first time I would run 25km and gradually get my body ready for the upcoming marathon. However, my right knee wasn’t going to play ball. I woke up early last Sunday, ready physically and psychologically for the big challenge. There was no organised race to go; so I used the map to find a 25km route in the neighbourhood. While I was running, at 12km, I started to feel pain in my right knee and not long after I couldn’t run further. To be frank, I couldn’t even walk. I have got patellofemoral pain syndrome – irritation where the kneecap rests on the thighbone – or ‘runner’s knee’. I was disappointed and worried. The injury will set back my training for a week, but next week I am confident I will be ready (or rather my knee will be) to continue the journey. Of course, I am not giving up. As you can imagine, this week is all about recovering, so lots of swimming and rest!
I have been looking forward this week, to the opening of Paralympics in Rio. I am happy to experience the shift in recent Games from athletes’ disabilities, to their abilities; rather than focusing on their back stories, instead celebrating their extraordinary skills. The coming days are here to help challenge the stigma that people with disabilities face worldwide and that can limit them in education, jobs, a decent standard of living and even a family or social life. Real progress will come when those with disabilities are seen neither as second-class citizens nor as superhuman with bodies that are either an object of pity or ‘super’ in order to be acceptable, but as fellow humans – who, like everybody else, should get support when they need it.
This week’s training schedule:
Monday 05th: rest
Tuesday 06th: swim 1000m
Wednesday 07th: rest
Thursday 08th: swim 1000m
Friday 09th: swim 1000m
Saturday 10th: 5km park run
Sunday 11th: 10km run
Lupus Group Ireland:
Lupus Group Ireland has recently closed down as a charity and donated more than €46,000 of its remaining funds to Lupus Research Ireland. However, the group has left their website active in order to continue educating people about Lupus, showcase stories, research updates, news and information on Lupus. In addition, the group is running a closed Facebook Group to encourage support from its community.
Lupus Warriors in Ireland can also join Arthritis Ireland. The organization invests in research to find new treatments and a cure, enabling and empowering people to become effective self-managers, raising understanding of arthritis as a chronic disease and fighting for better healthcare services. Recently, the organization delivered a record number of self-management courses and its helpline volunteers took over 2,250 calls. Arthritis Ireland also launched its own self-management courses for children, parents and teenagers. Arthritis Ireland is currently opening new branches and launching new walking groups.
Contact person: Caroline Daly
Tel.: +35 31 493 19 88
Running for Iceland
Published 1st September 2016
Week 19/24 Iceland, Hlaupandi Fyrir Lupus
The training has been great the last few weeks. I have reached my highest running km per month -150- and completed 3 half-marathons on the last 3 Sundays. This week I am planning to run 25km, my longest distance to date. Your support will give me the energy to go through the last 4 km I never run before.
After practicing for 5 months now, I figured out 3 things that help me complete an easy half marathon:
1. Don’t be afraid of running 5km the previous day
2. Eat lots of pasta the night before the run
3. Aim for an equal effort going uphill as well as downhill – rather than equal pace
This week, I am running for Iceland, for Lupus Warriors in this beautiful island. This summer, Iceland set the football world on fire at Euro 2016 and made all football fans talk about them. Fun fact: Iceland only has 21,508 registered football players, yet it beat England and reached the quarter-finals. This is a great example of the saying: “believe you can, and you will”. I am also captivated by Pétur Arnar Kárason who ran 21km a few days ago to raise funds for Lupus in Iceland. Read his story here (article in Icelandic).
This week’s training schedule:
Monday 29th: 4km run
Tuesday 30th: 10km run
Wednesday 31st: 4km run
Thursday 01st: 7km run
Friday 02nd: rest
Saturday 03rd: 5km park run
Sunday 04th: 25km run
Gigtarfélag Íslands – Rheumatism Association of Iceland:
The association is based in the capital of the country, Reykjavik. The organization supports its 4,800 members in activities such as gymnastics (in and out of the pool), physiotherapy and occupational therapy, peer to peer support and seminars on rheumatic diseases and related topics. The Association operates a hot-line which allows for questions to professionals twice a week, two hours at a time, from September to June.
A couple of photos from Andreas’ UK week
Published 23rd August 2016
Week 18/24 United Kingdom, Running For Lupus
Following Switzerland, another special week and a country I have lived in – the United Kingdom. A country where I made lifetime friends and met some of the most inspiring Lupus Warriors. I was part of the Mile End group in East London. We gathered in the hall of a church on the first Saturday of each month – if my memory serves me right. As you may know Lupies are not known for having good memories. There is even a term to describe it: Lupus brain fog. Anyhow, I will never forget the walk we did for World Lupus Day on an unusually sunny day in London. Many of my friends joined in and we spread the word while we raised funds through the website we built. I miss those days and now our British friends are making it difficult to join the workforce there as Europeans with the famous Brexit – hahah.
You can support Lupus UK by joining the fight against Lupus with its wristband. You can get it on the following site for just 1 pound. http://www.lupusuk.org.uk/shop/#!/Wristband/p/53854639/category=14192102
It’s a pity the summer Olympic games are over. I am inspired and in admiration of those athletes and what they have achieved. The drama that unfolds on the Olympic field of competition reminds us what its like to face ourselves when everything is on the line. Some things to take away (not Pizza) are: to acknowledge that all we can do is our very best and to appreciate every accomplishment. Look forward Summer Paralympics coming 7th of September.
This week’s training schedule:
Monday 22nd: 4km run
Tuesday 23rd: 10km run
Wednesday 24th: 4km run
Thursday 25th: 10km run
Friday 26th: rest
Saturday 27th: 5km
Sunday 28th: 21,1km run (Aucor Wanderers road race)
A national charity helping people with the presently incurable immune system illness lupus. It’s supporting some 6,000 members through the Regional Groups and advises many others on the symptoms prior to diagnosis.
Its vision is: A world where people with lupus can live full and active lives.
Its mission is: To empower people by providing information about lupus and offering support, so their voices are heard and their condition diagnosed and managed effectively.
Its values are empowered by the activities the organisation initiates and participates in. Those values are the belief that: the lives of people who have lupus can be improved, that lupus patients are entitled to specialised care and treatment, that lupus patients are entitled to the best possible information about their condition. These goals can be achieved by informing and educating the medical profession and the public about lupus and its effects, by bringing people with lupus together so that they are not isolated and by listening to people who want to talk about lupus.
Me with the Mile End lupus group in London during an awareness campaign.
Pictures from Switzerland’s week
Published 16th August 2016
Week 17/24 Switzerland,
Ränne für Lupus – Courir pour le Lupus – Corsa per il lupus
Grüezi – Bonjour – Ciao
Switzerland. I don’t think there is other country I will be running-for that has more spoken languages. So we have German, kh-kh, excuse me Swiss-German, French and Italian. Oh, there is also Romansh, but less than 1% of the country’s population speaks it.
This week is special for me because I used to be a member of the Swiss Lupus Organization and specifically in the Basel-Canton group, the area where I was living at the time. We met almost once a month. It was interesting that even though the members were not really at ease in English, and I was a beginner in German, we always managed to communicate and have fun. At the end of this post there is a picture of me with the Basel team during a dinner we organized.
Have you seen the European Patient Forum (EPF) survey? This is a project LUPUS EUROPE has been actively involved in as a participant in the Access to Healthcare work group at EPF. If you have few extra minutes, kindly complete the survey on Access to Healthcare.
I am very happy that last week I completed a half-marathon after a long time with only minor muscle pain. It gave me confidence to continue my training as scheduled. From now on, since there are only 2 months left, I will try to have a long run of over 20km every weekend.
This week’s training schedule:
Monday 15th: 5km run
Tuesday 16th: 10km run
Wednesday 17th: 7km run
Thursday 18th: 10km run
Friday 19th: rest
Saturday 20th: 5km
Sunday 21st: 21,1km run (ArthroChoice Advanced race)
Swiss Lupus Erythematosus Association – Lupus Suisse:
It is estimated that more than 2 thousand people are living with Lupus in Switzerland. However only 460 out of the 570 Lupus Suisse members are patients.
The Association was founded in 1987 as self-help group and became member of Lupus Europe in 1989. It’s currently celebrating its 29 years!!
The association’s goals are to:
- Spread LUPUS AWARENESS
- Represent the interests of lupus-patients in the public domaine
- Support members/interested people and promoting self-help groups
- Increase and maintain the quality of life for lupus-patients
Contact person: Max Hagen
Tel.: +41 44 833 09 97
Andreas sporting the Spanish flag
Published 10th August 2016
Week 16/24 Spain, Corriendo por Lupus
Tuesday 09th August is a public holiday in South Africa. It’s called a Women’s day. But this is not the typical international women’s day, rather a historical day. Sixty years ago, more than 20,000 South African women of all races – mothers, wives, sisters and daughters – staged a march on the residence of the presidency and government in protest against the tyranny of the Apartheid government.
Being a scientist by trade, it crossed my mind to estimate how many Lupus warriors were in that march. As has already been discussed, 90 percent of individuals diagnosed with the Lupus are women and if it’s considered that 1 in every 2500 woman have Lupus, then there were 8 Lupus Warriors in that march. I am sure they proudly represented us.
This week we are running for Spain. Viva Espana. One of the top summer touristic destinations in Europe. I assume, most of you reading this post right now are enjoying summer holidays. They are the chance to step away from everyday life, relax and do what you enjoy the most. Also, I am not going to get tired of mentioning it: always use sunscreen, wear hats and avoid hottest and most potent sun exposure.
My training is going well. I feel healthy and full of energy to follow my schedule and be ready on the big day – 6th of November.
This week’s training schedule:
Monday 8th: 15km run (night run)
Tuesday 9th: rest
Wednesday 10th: 7km run
Thursday 11th: yoga gym class
Friday 12th: rest
Saturday 13th: 21,1km run (Makro Wierie Road Race)
Sunday 14th: 7km run
Spain Lupus Federation – Federación Española de Lupus:
The organization has 23 representative members across the country. Their main objectives are to:
- Provide psychological, biological and social information on Lupus, in relation to the patient, family or professionals as well as on existing medication and side effects.
- Promote a change of attitude in both the patient and the family helping them learn to live with the disease.
- Getting Lupus patients unite and be aware of the activities carried out in the Association.
- Maintain a website and useful information for interest parties
- Celebrate World Lupus Day – May 10 – with a set of activities that spread Lupus awareness and support patients
Contact person: Susana del Pino
Tel.: +34 918-25 11 98
Wearing the Swedish flag
Published 4th August 2016
Week 15/24 Sweden, Spring för Lupus!
Back to South Africa. Back to Winter. Currently getting out of bed to 1° Celsius. Well, at least I am not sweating 2 litres on every run like I was in Cyprus. hah
This week we are running for Sweden, but everybody’s hearts are in Rio for the start of the summer Olympic Games coming Friday 05th August. Marathon running races will be taking place on Sunday 14th August for women and on the last day of the summer Olympic Games for men (21st Aug). Look forward dreaming how it feels to run for more than 2 hours at their pace. I guess I can run for 5 minutes their pace, or perhaps I should try and see.
A few days ago an incident happened that made me realize the importance of life and I wanted to share it with you. As we were getting ready to get to bed on a Saturday night I heard a scream from the bathroom. Because of the unusually cold temperature here in South Africa, a pipe burst and a mass of water flooded the bathroom and the bedroom. It reached more than 5 cm before we managed to turn off the main water supply 5 minutes later. Long story short, we managed to dry the floor and fortunately not much damage has been done. During the whole night I was thinking how easily a machine/system could malfunction with catastrophic results. Then I was thinking about humans. How fortunate I am to have all my pipes working with no bursts. My mind also wandered off on humans and the many different diseases, conditions that appear out of nowhere. Oh well, everybody has a destiny; some people make it 100 years others 10. The most important thing is to make the most of it.
This week’s training schedule:
Monday 01st: 7km run
Tuesday 02nd: 10km run
Wednesday 27th: 7km run
Thursday 28th: yoga gym class
Friday 29th: high intensity training
Saturday 30th: rest
Sunday 31st: 16km run
Sweden Lupus Group – Svenska Reumatikerförbundet:
The Swedish Lupus group is under the umbrella of the Swedish Rheumatism Association, a non-profit organisation working for people with rheumatic disorders. Its members benefit from access to a wealth of information about their disease, coping strategies, health guides, exercise programs and news about scientific research. In addition, the organization gives the opportunity to exchange personal experiences with others who suffer from lupus and the chance to tell your own story.
Moreover, the association advocates the importance of access to rehabilitation, shorter waiting lists for treatments, a labour market that doesn’t discriminate against people with rheumatic diseases and for a sufficient supply of medication to serve the needs of its members.
Lastly, the Rheumatic association funds scientific research into rheumatism and treatment methods through Rheuma Development Inc., a limited company wholly owned by the Swedish Rheumatism Association. The company conducts development, production and sale of educational and information material, training activities and other related operations within areas of concern for rheumatic diseases. Also, Rheuma Development conducts tests on products and packaging manageability.
Stretching for Slovakia
Published Wednesday 27th July
Week 14/24 Slovakia, Beh pre Lupus
I guess you noticed, last week there was no blog post, I got lost in Portugal celebrating Euro 2016. Just kidding, the real reason is personal and work related activities kept me busy so I decided to use the few hours I had free to run rather than write!
I am now writing this article from Europe, Cyprus. I left the mild winter temperature of South Africa and landed on a hot summer day to visit family and friends. Training here is not easy. I try to run either early in the morning around 05h00 when temperature is around 25° Celsius (77° Fahrenheit) or late in the evenings. However, at night the temperature is around 32° Celsius and it’s humid in Larnaca and difficult to run. Though, there are some nice perks, for instance I run on the shore and I can jump in the sea anytime to cool down.
This week I would like to share a Lupus Warrior motivated story from Norway called Kari. She reached out and among others she shared “The last two years I have participated in a bike race called Birken here in Norway. It is 94 km over a mountain, and I couldn`t feel my fingers during 5 of the 6 hours on my bike. Still, I did it – twice – and will hopefully do it again some day. Crossing the finish line gives a feeling that makes it worth it.” Go Go Kari.
Feel free to drop a line to Lupus Europe if you have accomplished any extraordinary activity recently –that might even be a 500-meter walk if it’s an achievement for you, it’s an achievement for all of us.
Time flies and it’s scary. I have not run more than 21,1km yet and I’ll have to run double that distance this coming November in New York. I am confident that if I continue following my training schedule all will be good. I also feel fortunate not to have had any injuries in the last month and I feel unstoppable on the road! (big smile ) My friend lupus will need to Keep Calm and Stay in Coma!
This week’s training schedule:
Monday 25th: 10km run
Tuesday 26th: 1000m swim
Wednesday 27th: 10km run
Thursday 28th: rest
Friday 29th: high intensity training
Saturday 30th: 10km run
Sunday 31st: 15km run
Slovak league against rheumatism – The Butterfly Club – Liga proti reumatizmu SR
A relatively small organization, and one of LUPUS EUROPE’s newer members, with currently 25 members spread throughout Slovakia. The group welcomes not only patients with lupus, but also family members and friends.
Although the number of members is not that high, the group organises different events for its members. For instance: cultural events, walks, informal meetings over coffee and cake, celebration of the World Lupus Day, meeting with the Czech lupus group among others.
Its vision is to raise awareness of the disease among the wider public and increase the quality of life of patients with SLE.
Its mission is to:
· Help patients with lupus who feel abandoned and isolated
· Raise awareness of the disease
· Inform about the disease, its origin, symptoms, diagnosis and course of the disease
· Inform the public and physicians about this serious disease
· Inform about treatment options and healthy lifestyle
A picture from Andreas’ week running for Portugal
Published 12th July 2016
Week 13/24 Portugal, Correndo Pelo Lúpus
Can you believe the coincidence?? Any claims that countries were switched to accommodate the EURO champions will not stand up in court! The schedule of countries to be highlighted each week was agreed months ago. Also, you cannot say that I bring bad luck – considering Belgium left the competition a few days before their week. And yet it happened, this week I am running for Portugal. Parabéns (congratulations) my dear Portuguese Lupus Warriors, family and friends.
“You won with courage, determination, fighting spirit and humility,” said the president of Portugal, as the team brought the Henri Delaunay Trophy home.
That’s the spirit every warrior needs to have. I encourage everyone to believe in herself or himself.
This week we encourage you to read the heartbreaking story of Anna, from Greece. Here is an excerpt from her article: “Over these years, I have learnt to love my lupus, despite so many difficult moments. I know that I need to relax and be as happy as I can. My lupus has made me strive to always try my best.”
I have to admit last week was fun. I had a goal to achieve. Run 10km every day. It was so motivating waking up early every morning to run. The first 2 days went easy, third and forth were a bit challenging to complete but the rest days have been unstoppable as my running App usually says. I think I wouldn’t have made it without Belgium’s support. The Lupus Organization there had a great idea in sharing my email address and encouraging people to write me a note. I am telling you, waking up at 05h00 in the cold mornings (here in South Africa) and reading those messages couldn’t be more inspiring.
This week’s training schedule:
Monday 11th: 1000m swim
Tuesday 12th: high intensity interval training
Wednesday 13th: rest
Thursday 14th: 1000m swim
Friday 15th: rest
Saturday 16th: 10km run
Sunday 17th: 15km run
Portugal Lupus Association – Associação de Doentes com Lupus:
Since 1992, date of its foundation, the Portuguese Lupus Association has always sought to bring together patients and the various elements that surround them; family and friends, doctors and other health care workers, the political world and society in general. Its objectives are to spread awareness of the disease, support patients and their families, promote the rights of patients with lupus, promote medical research on lupus and its treatment and encourage cooperation with domestic and foreign counterpart Associations. There are currently more than 3000 members.
The association is based in Lisbon and provides the below services:
- Call Line 800 200 231 free service, information to the general public and support to its members
2. It offers free temporary accommodation to patients and a relative or friend who need to stay in Lisbon or Matosinhos for consultations, treatment, etc.
- Schedules national meetings for patients, family and friends along with a panel of doctors, (various specialties), to answer questions as well as hairdressers and beauticians who teach patients to disguise the skin problems caused by lupus.
4. Play an active advocacy role within the Government, for patients with lupus so that they receive the right treatments. For instance, exempted from payment of all medicines which are reimbursed by the state, complementary disease allowance for children and young people whose lupus is severe, and a special quota for admission to higher education for students with lupus.
Contact person: Maria Altiva Paula
Tel.: +35 121 330 36 40
A picture for Belgium and Andreas’ office wall, filling up with flags!
Week 12/24 Belgium, Lopen Voor Lupus – Courir pour le Lupus
Hallo – Bonjour
Poor Belgians, I planned to start this article with cheering on Belgium’s national football team, but their dream to win the EURO this year was stopped by Wales. Reaching quarter-finals is still an achievement though. Anyhow, I can’t believe we are half way through. In less than 4 months Lupus Europe along with its members will be featured at New York Marathon. Can’t wait.
This week, we are reading Lupus Warrior Claudine’s story from Belgium. Here is an excerpt from her article: “[..] like every morning I wake up with a headache, the flu-like feeling and the rigidity of my body. [..] But this time it felt as if I had run a marathon. I hadn’t (smile)…”
A bit about preventing a Lupus Flare. Flares are an unfortunate part of living with lupus, but lifestyle changes can reduce the risk of flares. Eating a healthy diet, exercising regularly, avoiding stress, and staying out of the sun will help.
For my training this week, I got inspired by a fellow Lupus Warrior who normally runs 3 times 5km per week, but this week decided to go for 5 times 5km totaling 25km – Well done Bernadette. So guess what, this week I will go for 7 times 10km, simple. Also, I have a confession to make, last Saturday I registered to a half-marathon which I skipped and run 10km instead. My body warned me and I listened. You should do the same when you feel you are not up to taking a challenge.
This week’s training schedule:
Monday 04th: 10km run
Tuesday 05th: 10km run
Wednesday 06th: 10km run
Thursday 07th: 10km run
Friday 08th: 10km run
Saturday 09th: 10km run (Garsfontein Ice Breaker race)
Sunday 10th: 10km run
The Belgian Lupus Organizations:
The CIB-League association was founded in 1981, and its purpose is to provide information on Chronic Inflammatory Connective Tissue Diseases (CIB) such as Lupus, Scleroderma, Sjogren’s Syndrome, Poly- and dermatomyositis, vasculitis and MCTD.
That is been achieved through meetings, a magazine for members, its website, a public forum, a Facebook page, a newsletter, peer to peer meetings and exchanging patient information.
Contact person: Alain J. Baudrez
Tel: +32 486 48 50 80
The Association for lupus erythematous has 600 members who are either patients or friends and family. It organises conferences and the “lupus café” where people can talk to each other. The association is active on Facebook and has a quarterly magazine.
It has 3 objectives:
1) Patient support: A lupus diagnosis is a radical change for people with the disease. The organization arranges meet-ups with people who have gone through the same situation and who have overcome these difficult times. It aims to help patients live better with the disease and maintain a balance between family, professional and social life.
2) Information to patients and caregivers: Scientific knowledge and treatments are changing rapidly: A website (www.lupus.be), an information brochure and a quarterly magazine (The Link) help patients and doctors to keep up with the latest medical advances.
3) Defending the interests of patients: Despite lupus affecting a relatively small number of patients in Belgium, the association works with public authorities for reimbursement of new treatments.
Its mission is to inform people who are affected by lupus in some way, help them by answering their mails and phone calls and organise meetings.
Contact person: Bernadette Van Leeuw
Tel: +32 487 266 664
A photo for Norway!
Published 28 June 2016
Week 11/24 Norway, Løper for lupus
After all the discussions and the unfortunate outcome of the UK voting to leave European Union (EU), did you know that Norway is not member state of the EU? However, it’s a great thing to see Lupus Organizations across Europe being united under the umbrella of Lupus Europe with the same vision:
“A fulfilling life for all people with lupus in Europe until we have reached a world without lupus”.
As we are getting into July this week and the hot season in Europe, it’s imperative for our Lupus Warriors to protect themselves from the sun. Photosensitivity can trigger symptoms that range from skin rashes to serious internal organ damage. While excess sun exposure can cause flares, living with lupus should nοt mean depriving yourself of the outdoors. The key word here is excess and how to stay protected. Useful tips, among others, are: always use sunscreen, wear hats and avoid the hottest and strongest sun exposure times.
This week, we are reading about Lupus Warrior Kikka’s story. Here is an excerpt from her article: “Although Lupus has been a pain in the butt and has created obstacles in my life and made life a bit more challenging, I have been able to do all I have dreamt of”.
Kikka is a role model and inspiration to me for reaching one my dreams: running the New York marathon coming November. I am happy that my right foot has fully recovered from Reynaud’s phenomenon after 10 days with no running. I was doing swimming, yoga and spent a lot of time in the sauna. I was happy last Sunday to complete a 15km run with no pain and because of that I decided, this coming Saturday, to go for another half-marathon. The last 2 have were a disaster but I am confident this one will be the one to give me the push to increase the kilometres on the road – I have never run more than 21.1km so far.
This week’s training schedule:
Monday 27th: 1000m swim
Tuesday 28th: 10km run (Dynamite Night Run)
Wednesday 29th: boot camp gym class
Thursday 30th: yoga gym class
Friday 01st: rest
Saturday 02nd: 21km run (Jakaranda Race of Friendship)
Sunday 03rd: pilates gym class
Norway’s Lupus organization:
Lupus Norway was founded in 1992 and consists of 350 members. It is estimated that 2500 people have lupus in Norway. The country has a good health care system, which means patients don`t have to choose treatment based on their income. Some of Norway’s hospitals even have week-long courses, free of charge, where patients can learn about lupus and how to live a life with the disease.
The national lupus group is a part of a national rheumatism organization, NRF, which is an umbrella organization for all rheumatic diseases.
The lupus group provides information for its members online and over the phone. They also publish newsletters 2-3 times a year and organize and participate in regional and national conferences.
Some of its regions have lupus groups that provide information for patients in their region, and they provide great support for its members.
They also have a youth group for lupus, which is a part of BURG, under NRF, where you can also find other young people with different rheumatic diseases.
Contact person: Kari Ødegård
Tel: +47 913 291 81
Some pictures from the week running with the Netherlands
Published 20th June 2016
Week 10/24 Netherlands, Lopen Voor Lupus
Happy Father’s day to all lucky daddies, especially to Lupus Warrior fathers who despite their condition, are doing everything in their power to raise caring, respectful and moral kids.
On the other hand: Did you know that 90% of people with lupus are women? It’s a female-dominated disease. No wonder why many people are admiring how men deal with this, e.g. purple colours and butterflies. Hahaha.
There are more stories to read if you haven’t done already. Check out a Lupus Warrior from the Netherlands – Yvonne. Following it’s an excerpt from her story: “Of course I am sometimes angry or sad, exceed my boundaries and ask myself “why me?” but that is okay, that is only human. I am happy with my way of life.” Read more here by scrolling to Yvonne’s Story.
Also, if you are around Amsterdam this week, you should definitely attend Kim’s concert. Kim is an inspiring young Lupus Warrior who is determined to pursue her dreams and not let the disease get in the way.
A few words on my training: It was pointed out I have only 4 months to prepare for New York’s marathon this coming November. Last week I barely managed to complete the half-marathon. I need to up my game. Unfortunately, it’s the first year I have Reynaud’s on my foot. I didn’t even know it could appear on the feet! I thought it was only on the hands. Anyhow, I am doing lots of swimming now to keep in shape until my right foot gets better, hopefully by the middle of this week – a bit ambitious but possible!
I couldn’t omit mentioning Italy’s support last week – Forza Lupus Italy. Hope you liked the short clips I took during the run – it gave me boost to keep moving.
This week’s training schedule:
Monday 20th: 2000m swim
Tuesday 21st: 2000m swim
Wednesday 22nd: boot camp gym class
Thursday 23rd: 10km run (neighbourhood)
Friday 24th: rest
Saturday 25th: 5km park run
Sunday 26th: 15km run (The Big Red Barn Race
The Netherlands’ Lupus organization:
The NVLE was founded in 1980 and has about 2300 members. There are six general board members and in every province at least one patient representative. The representatives in every province organize a local meeting for patients at least once a year. The organization, which consists entirely of volunteers, accepts members with several autoimmune diseases such as Lupus, APS, Scleroderma and MCTD (a mix of auto-immune diseases, often Lupus and Scleroderma but also sometimes Polymyositis…).
Two committees organize national meetings. The first one is for Lupus/APS and the other one for Scleroderma/MCTD. Both work independently to support patients and raise disease awareness. This year the Lupus/APS committee organized a big congress on Lupus for the 21st of May and a national meeting for Lupus related to skin. There is also a scheduled national meeting on APS coming in November.
Another committee issues the Magazine “Venster” (which means window) four times a year, with a lot of information about the respective diseases. The Lupus/APS committee and the Sclero/MCTD committee have their own space in the magazine.
A separate committee is responsible for the organization’s website and social media. Lupus Netherlands’ members have access to a different sections of the website. In addition, they can ask medical questions to members of its Medical Board or any other questions related to social, legal and economic matters to experts who support the organization.
Contact Person: Wendy Zacouris
Tel.: +31 88 0157 010
Published 16th June 2016
Andreas managed to get a last-minute place for the half marathon! He has received overwhelming support from Italy this week. Here’s a short video he made for them while running.
Published 14th June 2016
Week 9/24 Italy, Corsa per il Lupus
Another week has passed. You wanna know something cool? Since starting this Lupus campaign in April we have run 185 kilometers for 8 countries. To put this into perspective, it’s like running from Pisa to Siena – passing through Livorno and Florence. That must be a very beautiful trip to make. Has anyone ever done it?
Last week, I was advised by a colleague to start having long runs in my schedule every week. This guy I am telling you, he knows this stuff, he has run more than 20 marathons in his life. So I decided to go for another half-marathon this coming Thursday, a public holiday here in South Africa. But you know what? I put it off, and put it off again and today when I went online to register for the race, boom: Registrations are now closed! Lesson learned? “Don’t put off till tomorrow what you can do today”, Thomas Jefferson. I know this quote has a much bigger meaning, but hey, now I won’t be able to promote our Italian Lupus Warriors the way they deserve. Nonetheless I will go for a run in my neighborhood.
How did you find Jeanette’s story? This week, we are reading about Anne’s teenage daughter who used to complain of extreme fatigue. Was it just end-of-school year tiredness? Also, read about her biggest lesson learned in a short article here.
This week’s training schedule:
Monday 13th: 10km run (around the office)
Tuesday 14th: 1500m swim
Wednesday 15th: boot camp gym class
Thursday 16th: 15km run (neighbourhood)
Friday 17th: rest
Saturday 18th: 5km park run
Sunday 19th: 12km run (neighbourhood)
Founded in 1987 by patients, the Italian association is a strong group with approximately 2,000 members. Next year Lupus Italy is celebrating its 30th anniversary! Its mission is to help everyone with lupus feel less alone and to promote the power of unity. The group holds regular meetings, which give them the opportunity to share their life experiences, support each other mutually and help each other cope with the disease. In addition, the group works towards raising patients’ awareness of their rights and providing helpful information that leads to a better quality of life as well as creating a network of solidarity.
Among others, its activities include:
- Organizing doctor-patient meetings, usually with the collaboration of professors from several universities, to showcase latest medical and scientific advancements on therapeutic protocols
- Running local self-help groups such as art therapy, psychological counselling
- Fundraising activities to support new research programs
- Participating in World lupus day press conferences, distribute leaflets and held doctor-patient regional meetings
- Leveraging the lupus awareness month in October to raise public awareness of SLE
- Funding – because of a recent special law, which allows Italian taxpayers to turn over 0.05 of their income taxes to non-profit organizations:
a. scientific research projects on SLE
b. training young doctors and helping them participe in International Congresses on Lupus
c. the “lupus clinics” that are already developing.
- Maintaining communication channels, such as a toll-free Helpline, a website and Facebook page with information on SLE and news on the Group’s activities;
- Publishing a biannual magazine (ICARO) with the latest on research and treatment
Andreas wearing the Hungarian flag
Published May 7th 2016
Week 8/24 Hungary, Futni a lupuszért
So, how was your run last week? no run? I hope there was lots of walking instead. Mine was tough, it was my forth time running a half-marathon and it felt like it was my first. To be fair, I felt better than the previous times until I reached the 18th km – then it got really tough. My right foot was swelling and my thoughts were screaming in my head to stop. And then something unusual occurred, a guy came running next to me and started asking questions about the flag on my back and its purpose. I was rejuvenated. He was kind enough to run with me for a kilometre while I was explaining the cause. Afterwards, he left me as he was running at a faster pace but with such great encouragement that it kept me going. But, when I finished I started trembling and my legs were completely done. I could barely walk; I actually lay on the grass for 10 minutes! The good news? No injuries except the bloody Raynaud’s phenomenon in my right hand. In case you are wondering, I have been running with gloves lately. This week will be mostly recovering.
Let’s cheer for Hungary this week. Our fellow Hungarian Lupus Warriors will be sporty in the coming weeks as they prepare for the UEFA Euro 2016. Enjoy.
On a different note, did you have the chance to read the stories published from Lupus Warriors a few weeks ago on Lupus Europe blog. All of them have a unique and inspiring element and I urge you to read them. For example, Jeanette shares how she switched from being a very active person to founding a new purpose and meaning in life by helping other people with RMDs all across Europe.
Week’s training schedule:
Monday 06th: 1000m swim
Tuesday 07th: interval training (gym)
Wednesday 08th: 10km run (around the office) & boot camp gym class
Thursday 09th: yoga gym class
Friday 10th: rest
Saturday 11th: 5km park run
Sunday 12th: 15km run (neighbourhood)
Gabriella Schopper Hungarian Lupus Group:
Founded by a Lupus Warrior, Gabriella, in 1993 the group has currently around 1000 members. It frequently organizes patient meetings, conferences with specialists who provide information on the latest advancements as well as publishing leaflets, maintaining an Internet forum and website and building up connections with international organizations. The Hungarian Lupus Group celebrates Lupus Day, 10 May, by spreading disease-related knowledge and by raising topics related to research funding and ways to make SLE a public health topic. In 2007, eleven country-wide affiliates were established in the country. Recently a big milestone for the group was achieved, their magazine Pillangó, was published along with a DVD that contains lectures given by specialists. Lastly, since 2009, a ‘Remember Krisztina Hevér Award’ has been established as big thank you for her hard work for the group.
Andreas running for Greece – week 7/24
Published Monday 30th May 2016
Week 7/24 Greece, Τρέχω για τον Λύκο
This week is exciting for 2 reasons. Firstly, we celebrate Global Running Day – 1st of June, so get your running shoes or any sport shoes you have (old & dusty or brand new) and hit the road or treadmill. Let’s be part of inspiring 1million kids to embrace running as a way to get healthy and fit. Secondly, you are now reading/listening to this blog post, which means you woke up to see another day, make it count and be happy – hope you are not taking it for granted. A motto I personally embrace is: Live each day as if it were your last.
Guys, do you have few minutes? Are you interested in improving healthcare in Europe? Kindly take the European Patients’ Forum survey– deadline to complete it is this Tuesday 31st May.
Lastly, a few words about my training. This week includes my 4th half-marathon (21.1km) – I guess it’s time to stop counting. In my last post, I was too optimistic with the recovery of the inflammation in my left leg’s lateral hamstring tendon, which is still there, but getting better every day. Well, that’s not all folks, Lupus is here to stay and be remembered, hey. Two more symptoms are currently reminding me of being Lupus Warrior. First, swelling in my right foot’s big toe area and second, Reynaud’s in my right hand. But hey, your support so far is keeping me moving – I feel pleased, thrilled, delighted, and blessed. Thank you – Ευχαριστώ (Greek, pronounced Efharisto).
This Week’s training schedule:
Monday 30th: 10km (around the office)
Tuesday 31st: 1000m swim
Wednesday 01st: 10km (around the office)
Thursday 02nd: yoga gym class
Friday 03rd: rest
Saturday 04th: 21.1 run (MTN Challenge Run)
Sunday 05th: Pilates
Greece’s Lupus organization:
Lupus groups are currently grouped under the Hellenic League Against Rheumatism (EL.E.AN.A). Under the EL.E.AN.A umbrella there are 2 sub-organizations, the Cyclades Association “Iasis” and the Dodecanese Association of Autoimmune Diseases Arthritis and Lupus “Thalia”. EL.E.AN.A is a not-for profit organization based in Athens. Its main objectives are to raise awareness on the problems faced by people with rheumatic diseases, to present the social dimension of rheumatic diseases, to conduct research for the benefit of its patients and to provide support in order to improve quality of life.
EL.E.AN.A is proud for a number of activities, below are some:
- 10 educational workshops throughout Greece with participation from physicians, patients and the public on the theme: ‘Together we treat rheumatic diseases better’.
- Two phone and email support lines for psychological support at national level (9th consecutive year).
- Education and Self Management Groups. Their objective is to provide to patients who have rheumatic diseases with sufficient information to meet the demands of their daily lives, with greater ease, and while maintaining a high quality of life.
- Youth Team, group of young people with rheumatic diseases aged 18-35.
- Awareness campaign “WALKING for LIFE and HOPE “in various parts of the country – on the occasion of the world arthritis day.
- Exercising classes such as Pilates, strengthening and aerobics on a weekly basis.
Contact Person: Pappa Athanasia
Tel.: +30 6936004726
Some pictures from Greece’s walk for awareness, ‘WALKING for LIFE and HOPE’.
A couple of pics from the week running for Germany
Published 24th May 2016
Week 6/24 Germany
With the weather getting warmer and the mercury rising higher in Europe to welcome summer season, I challenge you to get out and make that 20 minute walk you have been finding excuses not to do. Never forget your sunscreen, sunblock, sun cream or whatever you are calling it – in German is sonnencreme btw! The above 20 minutes walk is anything that makes you move and increase your heart rate a bit (not too much). Whether it is walking, swimming, cycling, low-impact aerobics, Tai Chi, Yoga, Pilates, or stretching, which can help tone your muscles and minimize joint aggravation. However, don’t push yourself too hard. You have to find a nice balance that works for you. It is important to allow your body to rest and recuperate.
Back to the training which, so far, is going well despite some minor pain and inflammation in my lateral hamstring tendon last week, but nothing serious. Monday’s swimming will get it back to normal. Oh btw, last week I had no rest, on Friday a colleague and I decided to run around the area near our office – it was a nice run and I included it this week as well.
Week’s training schedule:
Monday 23rd: 1000m swim
Tuesday 24th: 10km run (Dynamite Night Run)
Wednesday 25th: Boot Camp gym class
Thursday 26th: yoga gym class
Friday 27th: 10km run (around the office)
Saturday 28th: 10km run (Cosmos Run)
Sunday 29th: Pilates
Germany’s Lupus organization:
Lupus Erythematodes Selbsthilfegemeinschaft e.V. as it is called (only in Deutsch you find such big words, hah) has its 30th anniversary this year. So, Happy Birthday and wish you all the best reaching the next milestone of half century.
The organization has around 3000 members, 80 regional groups throughout Germany. It consists of 9 voluntary board members and its head office is in Wuppertal.
The organization is one of the most active in Europe. They publish a magazine 4 times a year called “Schmetterling” (Butterfly) and have a strong youth group called JuLE = Jugendliche mit Lupus Erythematodes (Young people with Lupus).
Lupus Germany is proud to be included in the activities below:
1) LuLa study: A longitudinal study whose objective is to determine disease-specific and individual factors associated with health-related quality of life of patients with SLE – that has been ongoing for 15 years now. I am told that it’s the only study in the world that has been running and “observing” patients for such a long time.
2) LUPP (Lupus prevention passport) supported by the German Ministry of Health = helping patients and doctors to rate any cardiometabolic risks and treat them early. A second element of LUPP is an emergency passport and collection of medical data, which is recorded yearly.
3) Founded: “Lupus Foundation Germany” was set up 10 years ago. It supports research and communication between health carers and organizes a big medical congress each year to bring researches and health carers together.
4) Involvement in political work: Participation in the Federal Joint Committee, which involves medical self-governing bodies: the national associations of doctors, the German Hospital Federation and the federal associations of health insurance funds. Through them Lupus Germany has succeeded in getting treatments approved for lupus patients. For instance, they fought against the German drug admission authorities to get Belimumab approved in Germany.
Contact Person: Simone Pretis
Tel.: +49 931 260 20 89
Pictures from Andreas’ weeks with Cyprus and France
Published 16th May 2016
Week 5/24 France
Last week was busy for all Lupus organizations due to World Lupus Day (10 May). Interestingly, a remarkable event took place where leaders of lupus patient organizations announced the launch of the World Lupus Federation (WLF) – 200 lupus groups from around the world which collaborate on lupus education, awareness and advocacy initiatives. During the event, the newly formed organization released the results of a survey. You can find out more in this article. Among other surprising facts, what struck me the most was that:
“1 in 3 people (31%) are uncomfortable sharing food with someone who has lupus, underscoring that people strongly believe the disease is infectious.”
This left me with mixed feelings. On the one hand, I was laughing out loud, but it also left me feeling determined that there is a lot of work that needs to be done to spread reliable information about the disease. Oh btw, for those who don’t know, Lupus is not infectious!
Anyway, back to the training. It’s been raining for the last few days here in Johannesburg –atypical- and most of my training has taken place indoors. We are getting into the winter season and I had to buy heavy winter gloves to protect me from my Raynaud’s syndrome. Being in the southern hemisphere, South Africa’s seasons are the opposite of European seasons. This might be positive though for my marathon preparation considering New York’s cold weather in November.
This week’s training schedule:
Monday 16th: 10km run (gym)
Tuesday 17th: 1000m swim
Wednesday 18th: Boot Camp gym class
Thursday 19th: yoga gym class
Friday 20th: rest
Saturday 21st: 10km run (Race Of Hope)
Sunday 22nd: Interval training (gym)
France has two Lupus organizations that are members of LUPUS EUROPE:
The first is AFL + (French Association of Lupus and other autoimmune diseases), founded in 1984 as a non-profit organization. The organization’s activities, among others, revolve around a quarterly newsletter, informative leaflets, a book “Lupus in 100 questions”, media presence and two or three events per year in order to collect donations to help the Association carry out its patient-centred activities.
The second association is Lupus France which was established in August 1999 in answer to an ongoing need to provide relevant and consistent information about the disease.
Published 09 May 2016
Hope you all had a wonderful mother’s day – especially Lupus Warrior mothers. We are saying good-bye to Finland and we are welcoming Cyprus. Last Monday’s half marathon was a lot of fun with more than 11 thousand runners taking part. However, I had hard time finishing the race due to food poisoning that troubled me three days before the run. Thanks to a good dose of stubbornness and perseverance I managed to complete it, though my time wasn’t as good as I would have liked – 2:22:59.
So let’s now forget last week’s disappointment, put on a smile and move on to this week, which is special for two reasons. First, World Lupus Day (10 May) falls in it – you can find out about the World Lupus Federation’s activities on the following website: http://www.worldlupusday.org. Secondly, this week’s training is dedicated to the country I was born and raised in. Here I am writing this article while having our traditional coffee thousands of km away from home. I guess it will be emotional when I get into the two planned races wearing my country’s flag on my t-shirt this week.
This week’s training schedule:
Monday 09th: 1000m swim
Tuesday 10th: Interval training (gym)
Wednesday 11th: Boot Camp gym class
Thursday 12th: yoga gym class
Friday 13th: rest
Saturday 14th: 5km run (Neon Run)
Sunday 15th: 10km run (RAC road race)
A few words about Lupus Cyprus
Lupus Cyprus (LuCy) Group is made up of people with SLE, including members of their families and/or their social environment. There are currently around 300 members but it’s estimated that more than 2000 Lupus Warriors live on the island. LuCy is an active group with several activities organised every year, focused on sharing good information, training and psychosocial support for its members, their families and friends. LuCy falls under the Cyprus League Against Rheumatism, meaning it is fortunate to benefit from their facilities. LuCy’s vision is to secure free access for each and every person with Lupus with the appropriate medical care, treatment and rehabilitation in Cyprus. This can be achieved by the long waited establishment of a Multidimensional State Rheumatic Clinic.
If you would like to get in touch with Cyprus’ Lupus organization, please find its contact details below:
Training week 3/24 – with Finland.
Published 03 May 2016
Week 3/24 Finland
Estonia’s week is over. This week we are running for Lupus Finland. I have to admit last week was a purposely relaxing one, in order to rest my muscles and joins for this Monday’s half marathon. This is my third half marathon to date and based on my previous two – it will be tough! But hey, the support I am getting so far from all the Lupus Europe organizations is overwhelming and my legs better adapt to the pace 🙂
This week is also special because the coming Sunday is mother’s day in many European countries. Although lupus can strike men and women of all ages, 90 percent of individuals diagnosed with the disease are women of childbearing age. So big cheers to all those Lupus Warrior mothers.
Week’s training schedule:
Monday 02nd: 21.1km run (MiWay Wally Hayward Race)
Tuesday 03rd: 1000m swim
Wednesday 04th: Boot Camp gym class
Thursday 05th: yoga gym class
Friday 06th: rest
Saturday 07th: 5km run (Park Run)
Sunday 08th: 10km run (Adrienne Hersch Challenge Road)
A few words about Lupus Finland:
Lupus Finland is a small organisation with just 150 members for the moment. It is estimated that around 2000 people have lupus in Finland. In the country, Lupus is considered a rare illness (1:2700 is the limit for being rare). Lupus Finland accepts members with or without Lupus. The Finnish social system is fortunately a decent place for lupus warriors in terms of care. Lupus Finland mainly work online, giving peer support and also attending events to represent people with lupus.
We are proud of the work they are doing.
If you would like to get in touch with Finland’s Lupus organization, please find their contact details below:
Contact Person: Kirsi Myllys
A pic from training last week, for Estonia
Published 25th April 2016
Week 2/24 Estonia
Last week was fun. It was the first week I wore the “Running for Lupus” theme on me while exercising/running for the Lupus cause, let alone for a country (Denmark). I ran in three organized races: two of 10km and a 5km. It felt positively peculiar and gave me an additional boost when I was being passed by, or passing other runners myself, because it was highly likely they would see the tag on my back. You see, I didn’t want to disappoint (smile ). Before or after the races I was asked few times, “What is it about?” followed by some interesting discussions. People were surprised when they found out that it’s estimated there are around 200,000 Lupus warriors in Europe and at least five million worldwide.
This week a new challenge is underway – for Lupus – for Estonia. You can see this week’s exercise plan below. You will notice it does not include a race, due to a half marathon that I will be running this coming Monday, 2nd May.
Monday 18th: 1,600m swim
Tuesday 19th: 10km run (neighbourhood)
Wednesday 20th: indoor bike class
Thursday 21st: yoga class
Friday 22nd: rest
Saturday 23rd: park run 5km
Sunday 24th: rest
If you would like to get in touch with Estonia’s Lupus organization, you will find their contact details below:
Contact Person: Ingrid Poldemaa
Tel.: +372 522 4479
Date posted – 18th April 2016
Week 1/24 Denmark
And the training begins. During the week of 18th-24th April I will be running for Denmark and I will have the above picture on my t-shirts during my training and races. Below you can find this week’s training schedule. In my schedule I include:
Swimming – which will help to increase my endurance and tone the body without putting stress on my joints.
Boot Camp – which will help muscle strengthening during a high intensity and low choreography activity.
Yoga – which will help to relieve any physical and mental stress and increase suppleness.
I am excited to embark on this journey and hope our fellow Danish lupies will get the chance to start /continue being active.
My week schedule goes as follows:
Monday 18th: 1,000m swim
Tuesday 19th: 10km race (Meerkat night race)
Wednesday 20th: Boot Camp class
Thursday 21st: Yoga class
Friday 22nd: rest
Saturday 23rd: Park run 5km
Sunday 24th: 10km race (Benoni Northerns)
If you would like to get in touch with Denmark Lupus organization, kindly find below its contact details:
Contact person: Tove Cassøe
Tel.: +45 22 756277
Greatest life Challenge, till the next one!
A few months ago I ran my first half marathon – I had been in the sport for 5 months before I felt ready to do so. Lots of people may argue that it can be achieved sooner. I decided to take it slow and listen to my body before taking the challenge. Also, I forced myself to run for a cause – to keep me motivated – and dedicated it to my sisters who have been winning against unexpected events in their lives. I have to admit thinking of them during the race worked pretty well, especially in the last kilometers when my gastrocnemius muscles got so tight I could barely run. But running a half marathon, I believe means you only get half the fun. So I decided to run a full one – 42,2km. Oh and also, why not do it at one of the most popular ones – the New York Marathon!
This coming November, 2016, I will be one of the 50,000 lucky ones who will be running through all five boroughs of New York City. I am also a Lupus patient – I was diagnosed in 2007 with symptoms of thrombosis and Raynaud’s syndrome. Because of that, I would like to run for Lupus and I have joined forces with LUPUS EUROPE (NGO) which will be providing me with a space on its blog to communicate my training news up until I complete the marathon on 6th of November. You have probably guessed right, this will be my motivation in the last kilometres, when I may be experiencing paranoia and I won’t be able to feel my knees or muscles. It’s a win-win, right? Raise awareness and promote an active lifestyle for Lupus as well as get the motivation I need to complete the race 🙂 .
The idea is to share my weekly training plan and dedicate each week to one of the 24 member countries of LUPUS EUROPE. It will be a great opportunity to share my experience with each member country, if possible through a Video Call.
This week is dedicated to Denmark.
“Remember that guy who gave up? …Neither does anyone else.”