WHO COMES TO ME?

ATTENTION FRIENDS OF THE CAUSE OF histiocytosis: last night, zepeando channels, I saw a program on the H & H that was primordial dwarfism, a rare disease. That program, the main issue was Nicollete, a little girl of nine years who lives in New Zealand, and amazingly, she is the only person in your country with that disease. In the USA, every two years, he has a small conference of people. Nicollete crossed the world to meet people like her. What caught my attention was that in the program during these conferences, geneticists examine all children and study cases. PEOPLE, THIS IS WHAT WE WANT. WHAT I'M THINKING IN A FUTURE BRIEF IN ORGANIZING AND CAN DO SOMETHING LIKE HERE IN BRAZIL, urging the international medical community for this debate, for these studies. The Histiocytosis is also a rare disease that does not have many reports in the medical literature, which does not have many studies. It is up to us as parents, we mobilize ourselves this question, we raise this flag more. Who's coming with me? Let's grow up this idea. Our community here is working, is a form of support unprecedented for me is great to share and talk with parents who have gone through everything I'm going through. If that reality is concrete now, why not dream beyond? WHO COMES TO ME?

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In disagreement

Yesterday my husband went to school children,Elisa's last year, and would be the second of the Julinho.The Julinho teacher gave us a DVD with pictures of when he went to kindergarten,playing with friends.I collapsed.I remembered the time he almost could not sleep all night because of the itching in the head,and yet I forced myself to go to school in the morning, believing it to be the best, so that he, in someshape could entertain themselves with their friends.I saw those pictures and could not stand.Even with all the problems and suffering, he played happily with the classmates.Never settle for the fact that he could no longer attend classes.This is something that has just the same with me.By the time he had a better quality of life he loved school.With disease progression, not sleep well, tired in the morning, he cried not to go.Sometimes he remembers that time and speak the name of friends and even the girlfriend.I remarked to my husband, who understand the situation though, why he could not go to school, he misses those days.In his little head when he returns to school, friends all the same, will still be there waiting for him.
Tomorrow, hopefully finally, knowing the outcome of the images and how are lytic lesions.Tomorrow will also be the first session of the 2nd chemo regimen.The cones persist in return, are harder.In appearance, are not as before, but the amount is almost the same thing.He is scratching more and has agreed a few times at night.Do not know if it's fear, but he says he is sleeping poorly because of the itching.We are apprehensive.The doctor told us that, from the 2nd week of chemo the first scheme, the cones would disappear. That's not what happened.Yes, there was great improvement, but never disappeared completely. With the suspension of all drugs, and without chemo since admission (24/11), the Histiocytosis is giving signs of life again. We are concerned ...

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