What have you learned about caring for someone with a rare disease that might be helpful to others?
- By leighahh · Posted January 1, 2009
- 0 replies
- My name is Leigha Hoffner and I am the mother of Jamil Hooper who has Bassen Kornzweig Syndrome. We live in Chicago, IL and I am starting a foundation called Jamil's Hope for Help Foundation. I was wondering ...
- By csmp · New reply December 31, 2008
- 19 replies
- Does anyone know of any new research or treatment for HEREDITARY SPHEROCYTOSIS? My husband, our two children, and now our grandchild has this blood disorder ...
- By KimberlyD0 · New reply December 29, 2008
- 40 replies
- My Daughter is 6.5 months old. When she was born her right leg and foot was covered in dark blue almost black vains. We were told she had a venus malformation and it would go away. When she was 2 months ...
- By eininsdad11 · Posted December 11, 2008
- 0 replies
- HI MY 6 WEEK OLD DAUGHTER IS CURRENTLY UNDER INVESTIGATION FOR GLUCOSE-GALACTOSE INTOLERENCE. I AM TRYING TO FIND OTHER PEOPLE WITH SIMILAR DISORDERS. APPRECIATE ANY HELP AT ALL. THANKS ...
- By Banks · Posted December 2, 2008
- 0 replies
- I noticed a member offering to share recipes adapted for people with AMN. I don't understand this. Why would a cookie recipe need to be adapted ...
- By csmp · New reply November 26, 2008
- 6 replies
- My granddaughter who is 3 years old has Hereditary spherocytosis. My husband, our daughter,and our son (her father) have it also. I wonder what new advances or new knowledge about this disorder are available ...
- By Ray · New reply November 25, 2008
- 8 replies
- This is a minor issue and I feel really silly asking. My medication must be refrigerated (34-46 F) and it must be kept dry. I also have to take a lot. So are there any products, containers, or ideas of ...
- By hlu1055 · Posted November 23, 2008
- 0 replies
- dear friends--my 25 year old son has a rare genetic condition, ring chromosome 15. 1 of the manifestations of this condition for him has been chronic middle ear problems coupled with variable hearing ...
- By tres · New reply November 16, 2008
- 2 replies
- Does anyone know of anyone having heart related issues with this skin disorder ...
- By 280696 · New reply November 2, 2008
- 6 replies
- My husband has recently been diagnosed with primary lateral sclerosis. Is there anyone else who has or is caring for someone with this disease ...
- By AuntLavonne · Posted October 26, 2008
- 0 replies
- I've been experimenting with family recipes to adapt for a nephew with ALD/Addison's Disease. This is the first holiday season for his family since the diagnosis - and we still need to have pumpkin pie ...
- By teadrinker · New reply September 13, 2008
- 7 replies
- My daughter has a genetic abnormaility that is robbing her of both sight and sound. So far I have not been able to find help on how to communicate with her - she has just a little left. She will lose ...
- By radiu · New reply July 7, 2008
- 1 reply
- Hello! I felling to writte because is many sufering and pain in this world.I want to put a question for all peplesw who visit this site; If the Jesus alivea in aor times,wat you think hapend?I know that ...
- By Lee3 · New reply June 11, 2008
- 2 replies
- Looking for support and discussion with other parents coping with kids with rare autoimmune issues as well as Chronic intestinal pseudo obstruction. Anyone else out there? Lee ...
- By Jimswife · New reply April 6, 2008
- 2 replies
- My husband has an autoimmune disorder (VGKC Antibody Syndrome). Our most recent crisis is that he seems unable to stay awake. Doctors have done the "musical chairs" thing to see if it is meds related ...
- By Jimswife · New reply March 24, 2008
- 4 replies
- My husband has been diagnosed with voltage gated potassium channel (VGKC) antibody syndrome. In November he had six rounds of plasma phoresis, which did not help. He has been on high doses of Prednisone ...
- By rielyo · New reply February 3, 2008
- 2 replies
- My son has a disorder called 5p-. Is there any one out there with genetic disorders in there family? How do they deal with it? What is there biggest issues? Do they have others affected by it ...
- By aimip · Posted January 4, 2008
- 0 replies
- I wish to inform this forum about the newborn Italian Organization (AIMIP) for Fibrosing Alveolitis (also named Pulmonary Fibrosis). AIMIP is an Onlus Organization in Italy (it's a kind of no-profit organization ...
- By sad-mom182006 · New reply September 12, 2007
- 8 replies
- My only advice for caregivers of sick childern is to do what is right for them . Put their care before your own some times a parent or other have to decide when a enough is enough. My son is sick with ...
- By babygirljl2 · New reply August 30, 2007
- 9 replies
- my five year old son has been diagnosed recently and I am trying to find out more information on the disease and how to understand what he is going through ...
