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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?
HEREDITARY SPHEROCYTOSIS
- By csmp · New reply November 15, 2009
- 67 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 ...
Hereditary Spherocytosis Questions
- By schester99 · New reply November 13, 2009
- 5 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 ...
NFCA webinar - Safe & Sound: How to Prevent Medication Mishaps
- By Amir · Posted November 10, 2009
- 0 replies
- Hello, Here is something that might be of interest for caregivers. The National Family Caregivers Association is hosting a free webinar titled "Safe & Sound: How to Prevent Medication Mishaps" which is ...
primary lateral sclerosis
- By 280696 · New reply November 9, 2009
- 7 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 ...
having adrenalectomy tommorow
- By nikides · New reply November 6, 2009
- 1 reply
- Any heads up on what to expect after adrenalectomy ...
My Daughter's DI
- By triggs42 · New reply October 25, 2009
- 4 replies
- My daughter was diagnosed with a benign brain tumor in which she went through 4 craniotomies with the 4th being for a shunt placement. In 2006, she underwent radiation to shrink the risedual tumor in ...
Duarte Galactosemia
- By hatbox121 · New reply October 23, 2009
- 2 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 ...
glucose-galactose malabsorption
- By eininsdad11 · New reply October 20, 2009
- 7 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 ...
spherocytosis
- By sfguido · New reply October 8, 2009
- 11 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 ...
Reglan & Antidepressants
- By richierich · Posted October 3, 2009
- 0 replies
- Hello Everyone. My little brother walked into a hospital for stomach problems and had to stay there for 2 days. On the day he was to be released, he inexplicably suffered heart failure. As a result, he ...
spherocytosis and sleeping a lot
- By ed77 · New reply October 2, 2009
- 4 replies
- My husband has hereditary spherocytosis as do his brother and father. However my husband seems to out sleep them all. On weekends he can easily sleep until noon. Sometimes he'll go to bed at 6 p.m. at ...
Devic's Disease/NMO
- By SistaMoon · New reply September 28, 2009
- 1 reply
- My Daughter Dawn was diagnosed with Devic's Disease/Neuromyelitis Optica in September 2008. Although her life has changed considerably, so has mine. I made the commitment to be her primary caregiver ...
My wonderful daughter has become disabled from TRAPS
- By marylouise · New reply September 6, 2009
- 9 replies
- My daughter, who is now 28, seemed to be on a fast track to success. She was 24 and finishing up her masters degree. She was simulataneously taking doctorate level classes and teaching undergraduate students ...
gastrocrom for the skin
- By mph · Posted September 2, 2009
- 0 replies
- anyone else having sucess with the gastrocrom mixed with Trader Joes lotion for the skin? I cannot believe after a year and half my skin is showing some signs of relief ...
HSP homeopathic treatments
- By Maddys_Mom · New reply July 31, 2009
- 1 reply
- Hello everyone:) I have a 6 year old daughter that has just been diagnosed with HSP. So far she hasn't experienced any interference in her quality of life. However, I am trying to get as educated as possible ...
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 ...
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 ...
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 ...
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 ...
