With Amys disorder, the company that manufactures the enzyme used - TopicsExpress

With Amys disorder, the company that manufactures the enzyme used for her enzyme replacement therapy always assigns a case manager to every patient. Our case manager called yesterday. He is VERY knowledgeable with Fabry and was touching base with me. He is Amys case manager until he retires. After we get everything under control, he will touch base with us periodically. He deals with the insurance company and knows resources for us as well. The company also has programs if for some reason she were to not have insurance to help keep her infusions going. He knows her genetics counselor personally and has some contacts he gave us and also some guidelines for her 504. If we have any issues, he is my go to person for help. I think it is wonderful a company who makes medicines, will think about the emotional needs of the people who use their product. It gave me comfort talking to him and knowing he is there for us. The idea of a cooling vest was brought up, it wont allow her to play sports, but it would allow her to be outside more. Our case manager provided a group that he thinks will provide one, but if not, I will look into getting one for her. I will save my pennies, to get her one. The National Fabry Disease Foundation has a family weekend every year at Victory Junction Camp, it is a camp for children with special needs or rare conditions. It has a state of the are medical facility and a pediatrician on staff. We have been invited to attend, it would give Amy the opportunity to see she is not alone and meet other kids with the same disease. Once her DNA map comes back, I get to be tested too. I may have it and not be as severe, if it is on my side, they will continue to test my family tree. Some people have asked what is Fabry disease. Fabry disease (/ˈfɑːbri/) is a rare genetic lysosomal storage disease, inherited in an X-linked manner. Fabry disease can cause a wide range of systemic symptoms. Enzyme Replacement Therapy is not a cure, but will help slow the progression down.

Hi this is Sir, Albert /FRD of (PROLIFIC HEALTH OPTIONS AND

KAISO JOE TRIBUTE TO VC. BIRD: Kaiso Joe recognized a Great

Advice Needed: Hey all, I recently picked up a 1979 CJ7 with AMC

Prezados pacientes alunos e alunas do Curso de Geografia da UFCG,

How you can prevent blackheads and whiteheads? Here are some

Preserve me, O God: for in thee do I put my trust.2 O my soul,

..drim big cz wat u drim s wat u wil du.f u wnt 2 b a

The probables of Pakistan kabaddi training camp appeared in trials