Patient Testimonial – Eric S – August 27, 2018
Three years after autologous hematopoietic stem cell transplant for systemic sclerosis
I was a person who was passionate about sports and life.
On January 6, 2014 I was admitted to emergency for a pulmonary infection and a bilateral pleurisy. Other attacks soon followed …
In June 2014, I was diagnosis with severe systemic sclerosis.
On October 5, 2014, I met Professor Farge from St Louis Hospital in Paris to sign-up for the autologous stem cell transplant program. I felt and knew this was my one chance. I am here to express my gratitude to the Saint-Louis team.
I could no longer walk, my body knew only suffering, like being entombed in a sarcophagus. Every breath required intense effort. At the height of my illness, I had a Rodnan’s score of 42. My organ involvement was complete (pulmonary, digestive, cardiac, and cutaneous). My hands were like those of a playmobil figurine, with finger ulcerations.
On November 4, 2014, I returned to Pr. Farge’s department at St. Louis Hospital to begin the autologous stem cell transplant treatment. The first step was to harvest my stem cells.
On December 26, 2014, I returned to St Louis Hospital in the hematology transplant department to receive a transplant of my own stem cells.
After the autograft, which was a very difficult experience, I was able to go home and start an intensive rehabilitation. I had to relearn everything, including to walk and grasp objects, but the important thing was that I was alive and with my family. In time, I gradually began to play sports again, always with objective of correcting my handicaps.
Today my skin has returned to normal, and I have a Rodnan score of 0. I was able to put my wedding ring back on without having to change the size. During my first stay in intensive care, my hands were so swollen that my ring had to be removed. A nurse with a lot of patience and experience removed it without having to cut it, but it was impossible for me to put it back on. Today I can put it on and remove it as easily as I did before.
I am here thanks to this precious gift from the entire St-Louis team. Thank you for this second lease on life and what better testimony than a little video showing what I am capable of now.
Testimonial from patient – Eric L – January 12, 2017
Since 2012, I have had severe systemic sclerosis (affected kidneys, lungs, heart and digestive system). After several months of difficult treatments with Endoxan and Myfortic, I was fortunate to benefit from a donor mesenchymal stem cell transplant treatment in the internal medicine department of Saint Louis Hospital in November 2016.
Very quickly I felt an improvement in skin flexibility, especially on the face and hands. For many months the impact of the disease had been very problematic, particularly the effects on the face, with occasional periods of severe acne breakouts that were very debilitating because of the stares – which were difficult to bear. I take Tétralysal which inhibits those unsightly, and painful, pimples. At the same time I hydrate my skin (face and body) with a dry oil (Monoi Florescence) from Lea nature that I find in supermarkets (8 €) or on the website. This oil is very effective, it makes the skin soft and penetrates immediately. The whole family has begun to use it. Be careful, it does not protect from the sun. I use it morning and evening, and I saw a clear before and after change.
I was fortunate to be surrounded by medical and paramedical teams who were very professional and attentive.
I try to keep up with my daily activities and time for recreation while reserving moments of rest, both in the morning and in the early afternoon.
I try not to think of myself as sick but as a full individual even if sometimes it is difficult. I wish you all a happy 2017 New Year. Let us not forget to plan projects but also that ensure that every day there is a small moment of joy in the present, that before the disease we took for granted and which today represents happiness.