In 1999 when the neurologist said to me, “You are suffering from a Sensory and Motor neuropathy also called Lewis-Sumner Syndrome or MADSAM [a variant of CIDP], a disease with prevalence estimated at between 1 and 9 cases per million.” I was 30 years old, and I didn’t realize at this moment would change the rest of my life.
Progressively, I understood I would have to undergo regular hospitalizations several times a year for my whole life and unfortunately, also realized despite the treatment, the disease gradually affected my physical abilities, my professional and personal life, and my psychological wellbeing. I had to rethink my whole life differently.
Due to the lack of information in France, I decided in 2006 to create a non-profit organization to help other patients suffering from rare peripheral inflammatory and/or autoimmune neuropathies. Progressively our association built strong relationships with others organizations involved in this medical area in France, UE and USA.
When I wrote to the GBS/CIDP Foundation International for the first time in 2011, I was looking for more support for patients, and I received a wonderful reception from the members. Since the beginning, I especially appreciated the global vision of the group and the willingness to bring the continents together despite the cultural diversities and disparities in health systems. I also very much appreciated the professionalism and dedication of all the staff.
Chronic and acute immune-mediated neuropathies have a negative impact on quality of life. Patient organizations involved in the domain have to build strong networks worldwide to stay close to the needs of all patients and to accompany the improvement of each health care system. The GBS-CIDP Foundation International clearly takes a constructive approach.
Finally, for me, strong questions about therapy access (including human plasma resources) for all patients and cost of drugs (including orphan drugs) will be a challenge in many countries for years to come. Patients organizations, states, health care providers and industries will have to find a way to work together to find solutions for patients worldwide.