World Hemophilia Day on April 17. In France, about 15,000 people suffer from hemophilia and other constitutional deficiencies of coagulation proteins. For this WHD 2024, the theme “Equal approach for all coagulation disorders” was chosen. The possibility to head towards the overseas departments, especially Reunion, where you can get the proper support of obstacle courses. Testimonials.
Isabelle Mouraman is the president of the French association of hemophiliacs (AFH) Réunion. She is also the mother of a teenager, now 19, who suffers from a platelet disorder that could be similar to empty-pool disease – a rare, mostly inherited thrombopathy, defined by a lack of dense granules within platelets, which causes bleeding of generally moderate intensity. “It can”, because since the first signs appeared in 2006, the diagnosis has still not been definitively established.
“We went through a long and difficult phase of diagnostic wandering, says Isabelle Mouraman. In 2008, doctors at Saint-Denis Hospital discussed Willebrand’s disease, one of the most common forms of the group of rare constitutional hemorrhagic diseases (MEHMO). Four years later, that first diagnosis was overturned, and during that time my son was regularly hospitalized for bleeding. We went to consultations with different doctors in France, at the University Hospital in Lyon, Nancy, Lille and now in Marseille where they are now following us.”.
Treated in Marseille
Between Saint-Denis de la Réunion and Marseille, 10,786 km. This is the price to pay for proper monitoring, even if bioassays are still ongoing to determine if the empty pool disease lead is indeed correct. In the meantime, the president continuesAFH meeting, “we lead everyday life, with more or less complicated moments”. And every six months they go to Marseille for a week of treatment and check-ups – with the added difficulty that the young man has developed ankylosing spondylitis. Those return trips by plane have a price, as well as accommodation – still better than hospitalization, which would be more expensive, explains Isabelle Mouraman. “There is a contribution from our joint fund, but the rest is our money. »
This particular case is not unique, at least as far as care on an island in the Indian Ocean is concerned. On the occasion of WHD 2024, the president of AFH Réunion collected several testimonies of patients who were faced with unworthy and harmful emergency care. We bring you two, that of Frédéric, an adult hemophiliac, and that of Joselit, the father of two minor children with hemophilia.