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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?
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 ...
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 ...
It's very important to love and trust in GOD
- 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 ...
Parenting children with autoimmune disorders, etc.
- 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 ...
Unable to stay awake
- 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 ...
Use of Immunosuppresants
- 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 ...
genetic disorders
- 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 ...
Pulmonary Fibrosis
- 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 ...
my advice for you
- 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 ...
aspergers
- 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 ...
Creutzfeldt-Jakob disease, hospice&palliative
- By LadyKitty · Posted July 14, 2007
- 0 replies
- CJD Aware! is currently supplying resource information to hospice and palliative care organizations. Read about this important endeavor here: www.prleap.com/pr/85291 ...
SPINOCEREBELLAR- ATTAXIA
- By POKEMOM · Posted May 1, 2007
- 0 replies
- If you can give me some information about this disease (SPINOCEREBELLAR- ATTAXIA) it would be greatly appreciated. I am lost and don’t know how to help my friend in coping with it. He is in a lot of pain ...
Growth hormone
- By Katrina · New reply February 28, 2007
- 1 reply
- How does all this work? I'm new to it all ...
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