Ehlers-Danlos syndrome: Fighting from Belgium to Sweden
Florence Simonis summarises accurately, if a bit sadly, the life of a rare disease patient.
“Every day is a kind of fight against the pain, the fatigue, the invisible disability, the way other people look at you and sometimes their incomprehension, but also against the institutions when you try to obtain support to cope with the disease”. Florence is the president of the Belgian GESED (Groupe d’Entraide des Syndrômes d’Ehlers-Danlos – Support group for Ehlers-Danlos patients) and she suffers from Ehlers-Danlos syndrome (EDS) herself.
Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect connective tissues – primarily skin, joints and blood vessel walls. The severity of signs and symptoms of Ehlers-Danlos syndrome can vary widely but in general, signs and symptoms can include: skin that is especially stretchy or fragile, hernias, abnormal wound healing, scars that stretch over time, flexible joints that extend beyond the normal range of movement, heart problems.
GESED was created in 2002 and nothing existed at that time for French-speaking Belgians suffering from EDS. “At that time, Mrs Ute Costermans, who was president of the GESED until the beginning of 2009, took part in the meetings of AFSED (Association française des Syndrômes d’Ehlers-Danlos, the French association for EDS patients) as there was no organisation like this in Belgium. She wanted to set up a similar support structure in Belgium. She organised an initial meeting in Belgium, in 2000, with people affected by EDS who were keen on setting up such a group. She had the support of two French doctors from AFSED who brought the scientific point of view of EDS and two years later, the association was founded.” GESED not only gave voice to EDS patients, it also strived to correct grave injustice. “Many parents were accused of ill treating their child because of the bruises and frequent wounds. On top of that, they did not get reimbursement of their health care and the symptoms became worse in time,” explains Florence Simonis.
This pretty new association has already managed to get the physiotherapy expenses of EDS patients better refunded by the Belgian health authorities. GESED works at obtaining recognition of EDS as pathology in order to offer patients additional financial resources to reorganise their house or their work place, for example. Through a newsletter, annual meetings, booklets and regular contributions at cultural events, GESED tries to raise awareness of the disease in a more thorough way because Ehlers-Danlos is often pictured by the hyper laxity characteristics that it gives to muscles and joints and not the other associated symptoms. This lack of information can slow many diagnoses and prompt wrong diagnosis as illustrated in the EurordisCare study.
When Britta Berglund, a Swedish nurse, met her husband Filip, she did not notice anything. Later he told her about his very fragile skin, his easy bruising and bleeding of the gums. “This ran in his family and it didn’t matter much,” remembers Britta. But when Filip’s mother died after a stomach operation because she lost too much blood, a warning bell started ringing in Britta’s head. Gum bleeding is one thing but bleeding to death? “It was in 1989 and we did not have internet. So I wrote to an American doctor that I had heard at a conference. He sent me a lot of information and that’s when I learned about Ehlers-Danlos!” remembers Britta Berglund.
The shock did not last long though. “We thought that if the US could have an ED association then why not here in Sweden?” So in 1992, EDSRIKSFÖRBUND, the Swedish association for EDS was founded with 25 members and now has over 500. “We slowly developed the association, started to look for information and I wrote to the Health Administration in Norway and asked for information if there was an association for EDS there. And guess what, the British association Ehlers-Danlos Support Group wrote at the same time to Norway with the same question, and they connected us! We have visited them and been to their conferences. We have, together with Denmark and Norway, arranged three Nordic conferences on EDS, the next will be in Copenhagen in October 2010,” relates Britta.
As a nurse and founder of the Swedish EDS association, Britta Berglund addresses daily the main concerns of patients. “Where can I find a doctor and other professionals that can help me when I am in need of care? How can I get help for my pain? Should I have children when I have EDS? How should I exercise to keep my strength?” Britta Berglund became a doctoral student in 1996 and did her PhD on Ehlers-Danlos syndrome. She has continued to study EDS and has been writing papers in Swedish journals for nurses, district nurses, occupational therapists, physiotherapists and physicians. She has two children (neither has EDS) and after being the chairperson of the Swedish EDS association for 18 years, she has recently resigned because she wants to dedicate more time to her new research project. The latter is about food hypersensitivity, bowel problems, nutrition and oral health in patients suffering from Ehlers-Danlos. And also, Britta wants to spend more time with her grandkids. Yes, sometimes 24 hours a day is not enough.
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Online Communities For Rare Disease PatientsThis article was first published in the October 2009 issue of the EURORDIS newsletter
Author: Nathacha Appanah
Photo credits: © GESED & Britta Berglund