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Tips for caregivers
What have you learned about caring for someone with a rare disease that might be helpful to others?
spherocytosis
- By sfguido · New reply June 29, 2009
- 3 replies
- Hi, my wife and I gave birth to our son on 3/11/09 he was born with hi jaundice and had to get a blood transfusion, about 2 weeks ago we had a cbc done on him and he had a hemoglobin level of 6.3. we ...
Boerhaave Syndrome
- By psuer · New reply June 26, 2009
- 1 reply
- My wife had a perforated esophagus which was repaired. I'd be interested in speaking with anyone who had a similar experience and outrcome so that I can get an idea as to what to expect in the futuer ...
HEREDITARY SPHEROCYTOSIS
- By csmp · New reply June 21, 2009
- 37 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 ...
Lyme Disease
- By IngridGuerci · New reply June 3, 2009
- 1 reply
- Is there an email support group here at NORD for survivors of Lyme disease and the caregivers? A friend of mine just found out that her son has probably had it for the past ten years. Thanks. Ingrid/NYS ...
Hereditary Spherocytosis Questions
- By schester99 · New reply May 30, 2009
- 2 replies
- I'm seeking info regarding this disorder. My granddaughter (6weeks old) was dx'd with HS recently. We've been told that viral infections can cause problems for the child's blood count, but I'm not sure ...
glucose-galactose malabsorption
- By eininsdad11 · New reply May 28, 2009
- 5 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 ...
Place to look
- By bradleigh · New reply May 13, 2009
- 2 replies
- I am not a Dr.. I have wide interest and read. I have read 3 books on natural organics that have healing properties. They are written by John Heinerman: Encycopedia of Healing Herbs and Sspices, New Ency ...
Bassen Kornzweig Syndrome
- By leighahh · New reply May 8, 2009
- 3 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 ...
Duarte Galactosemia
- By hatbox121 · Posted May 1, 2009
- 0 replies
- Hi. I am mother to a five year old G/D girl named Madison. At day 9, the dr. office called me and told me to IMMEDIATELY stop all nursing and milk formula, to go to the health dept., that they were opening ...
Alopecia Universalis
- By alopecia · New reply March 21, 2009
- 1 reply
- Hello, my husband started losing hair just before Christmas of 08. He has been to a dermatologist, endocrinologist, internist, plust the family doctor. He now has absolutely no hair left on his body which ...
Silent treatment
- By david21 · Posted March 3, 2009
- 0 replies
- My wife, has been diagnosis with The cellular phase of myelofibrosis. She will not tell me anything ...
CMTC
- By KimberlyD0 · New reply February 12, 2009
- 42 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 ...
a special diet for those with AMN
- 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 ...
hereditary spherocytosis
- 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 ...
Traveling issues
- 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 ...
cholesteatoma/ear prosthesis
- 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 ...
CMTC
- By tres · New reply November 16, 2008
- 2 replies
- Does anyone know of anyone having heart related issues with this skin disorder ...
primary lateral sclerosis
- 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 ...
ALD/AMN
- 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 ...
advice on deaf-blind help
- 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 ...
