A very touching post from Ana Soria, the mother of a 12-year-old diagnosed with Idiopathic Thrombocytopenic Purpura, an autoimmune disease that causes internal bleeding due to premature destruction of blood platelets. Ana shared this testimony with the Brazilian group "Protocolo Coimbra - Vitamina D para Esclerose Múltipla e Doenças Autoimunes" and kindly allowed us to publish it on our site:
"One of the cruelest feelings one can feel is impotence in the face of pain and suffering, especially when it comes to a loved one.
When it comes to a child then, this feeling triples the anguish of not being able to do anything at all when the problem is illness. We silently implore God to relieve, to spare, to transfer to us mothers, the pain of our child.
If it were possible, we would take it by the hand and lay it on us!
In a pediatric ICU setting where the air is cold and time seems to stop, that feeling is even more glaring.
Any movement, any gesture or sigh, a beep that rings suddenly or a simple blood test, takes on other proportions. Serious cases or simpler cases do not matter. Each mother / father / family knows exactly what cross they carry.
Stories of lives that intersect in the corridors of grief and hope, in the endless waiting for an improvement at the side of the bed, in anticipation of hospital discharge.
To be a mother is to suffer in love and infinitely in pain ..."
I wrote this text almost a year and a half ago, when I discovered my daughter's disease. She is 12 years old and was diagnosed with ITP (Idiopathic Thrombocytopenic Purpura), an autoimmune disease that destroys blood platelets and can cause internal bleeding.
We did the conventional treatment with corticosteroids and immunosuppressants but the answer was always the same: without medication the platelet count went very low.
There were five hospitalizations, weight gain, swelling, stretch marks in the body, low self-esteem, irritability, hair loss, aggression, emotional instability and the onset of osteoporosis due to the prolonged use of Prednisone.
Right from the start, splenectomy (removal of the spleen) was indicated but it was never a good idea for her or for her family. Looking for other treatment alternatives, I became aware of the Coimbra Protocol.
After researching and reading about it, and considering the reports and testimonies of this group, specifically some related to ITP, I was filled with hope and I decided to take a chance. It was not an easy decision since it is about the life of another person that depends on you and therefore the weight is even greater. On February 2 of this year, after a consultation with Dr. Danilo Finamor, we started treatment with vitamin D.
I am happy to report that the platelets have normalized! I know that the path is long and there are still many uncertainties as we will return in consultation at the end of this month to evaluate the first test results. But surely this is the path of hope, health, normal life back!!!
It is regrettable that this treatment is not yet accessible in financial terms to all patients with autoimmune disease because it has a relatively high cost (consultation, tests and multivitamin).
Thank you immensely to all who leave your doubts, testimonials and stories here, to dr. Cícero Coimbra for his discovery and for not giving up his ideals.
Thank you vitamin D people!!! Strong hug."