In March 2021, faced with the suffering witnessed by many people around her, Marie-Ange CASALTA-HENRY, dietician in Ajaccio decided to found the Facebook group Corsica Spondylarthritis. Via this space, its creator, also suffering from spondylitis for 10 years, wanted to create for all those affected by the disease a place of benevolent exchange on the subject.
Spondylarthrites correspond to inflammatory and chronic rheumatism that will mainly affect the lumbar region and the pelvis. These joint diseases are responsible for extremely disabling pain which has a strong impact on all aspects of daily life for people who are affected but also for those around them (for more information: consult the dossier of INSERM on this subject).
Despite a glaring public health problem, Marie-Ange CASALTA-HENRY noted that there is no patient association for spondylitis in Corsica. However, the problems caused by the disease are major and go well beyond the purely health aspect:
- Already, for people with spondylitis, drug treatments are very heavy to bear, they are therapies comparable to those used for chemotherapy. For Marie-Ange, “we must really integrate these drugs into our lives, we are disabled and we must observe increased monitoring of all the risks of pathologies that could develop with the taking of drugs“.
- But in addition to a daily life marked by pain and difficult therapies, a complex course of care is added for new patients. “Pto start treatment, we have to go to the mainland”Reports Marie-Ange CASALTA-HENRY. Indeed, like many other chronic pathologies, the absence of a CHU in Corsica means traveling to other cities – often Nice or Marseille – to start treatment. Consequently, on top of an already disabling disease, major organizational and economic difficulties are superimposed for the patients but also for their families.
Faced with this disease which has an impact on all aspects of an individual’s life – whether in terms of health, family, economic or social life – Marie-Ange wanted to offer a global listening: “I created this group because a lot of people suffer from spondyloarthritis and a lot of people have questions. There are many difficulties in diagnosing and managing the disease. Either we have the instantaneous form that we see immediately on the images, or a latent form that is more difficult to diagnose. The announcement of the disease is complicated, you have to deal with the chronic fatigue that sets in and it is very complicated to deal with the pain on a daily basis ”.
Information on the treatments available and the progress of research in this area is communicated regularly. But above all, the support group offers listening and daily support. “THEhe objective here is not to establish diagnoses but to help people in their daily psychological procedures, to be better in their bodies, to guide them as well as possible. If from a psychological point of view it does not go, we can direct them towards psychological care. The idea is not to stay focused only on pain but to guide the other in taking charge which is global. The objective is to be able to help these people, to show that we can manage to live with them and that we can have a better quality of life.“.
Today, the Facebook group Corsica Spondylarthritis is composed of a hundred active members who exchange daily. For the moment, Marie-Ange does not wish to position herself on the creation of an association “maybe the project will come a little later, the objective is first of all to expand the group“. Indeed, the members of the group are mainly located in Ajaccio but Marie-Ange wishes to be able to enlarge the community with people located throughout Corsica. A first physical meeting had taken place in May between the members of the group, the ambition would be in particular to be able to replicate the event in the coming months, with a larger group if the health context allows it.
Want to know more ?
Do not hesitate to contact Marie-Ange CASATA-HENRY to this email address: [email protected] or to the Corsica Spondylarthritis Facebook page.
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