Tips for caregivers

What have you learned about caring for someone with a rare disease that might be helpful to others?

Discussions

Spherocytosis

• By csmp · Posted May 16, 2013
• 0 replies
• Does anyone have information on children's leg cramps associated with spherocytosis. Is there a difference between those that happen during the night or during play ...

Share your advocacy stories

• By sromesgene · Posted May 14, 2013
• 0 replies
• Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families ...

traps

• By vikki83 · Posted May 13, 2013
• 0 replies
• my son is 12 nearly 13 he has traps and is agony nearly all the time the only thing he doesnt get is the rash but his attacks are so close together now they are almost constant ..He can no longer be treated ...

HSP(Enoch-schonlein purpual) HSP virus

• By Ash123 · New reply May 3, 2013
• 1 reply
• My 6 year old got has kidney problem since she was 14 months old. She has been toilet trained both day and night since she was 2 1/2 years old.in December 2012 she got this HSP virus took her to the hospital ...

Genetic Alliance Weekly Tip #6: My Health, My Decision

• By GA_Alyson · Posted April 24, 2013
• 0 replies
• We should not be passive recipients of healthcare; rather, to the greatest extent possible, we should all be partners in decision-making about our own health. My Health-My Decision is part of an initiative ...

Necrobiotic xanthogranuloma (NXG)

• By ahgreer04 · Posted March 15, 2013
• 0 replies
• IVIG is the only treatment to try!! I could see fast results!! & So pleased ...

Fabry teenagers

• By Concerned-Grandma-P · Posted February 17, 2013
• 0 replies
• Grand-daughter's has been to many specialist for Juvenile diabetes, chronic fatigue syndrome, rheumatoid arthritis and others. They all say they don't know what is wrong and their test are non-conclusive ...

Mother was Recently Diagnosed

• By imacolatta · New reply February 13, 2013
• 9 replies
• Hello all, My mother was recently diagnosed with Systemic Mastocytosis after a Bone Marrow Biopsy. We have no idea how long she's been afflicted with this, but suspect it's certainly longer than we know ...

16P11.2 microduplication

• By Roxxxypromo · Posted January 22, 2013
• 0 replies
• Hello, I am new to this site and my 5year old son was just diagnosed with the above "syndrome" does anyone know anything about it or any good literature? My husband and I are meeting with the geneticist ...

Waardenburg Syndrome Type IV pictures

• By javierpino00 · Posted December 22, 2012
• 0 replies
• Hello, My name is Jaiver and I am a Biology Graduate Student at Florida International University. I am currently performing my research in the mechanisms that control pigmentation and one of the main ...

FMF

• By leslybalzano · New reply December 14, 2012
• 1 reply
• My 4 year old daughter was diagnosed with FMF a little over a year ago. The symptoms started when she was 6 months old. It began with recurrent high fevers (up to 106 degrees). The symptoms now have worsened ...

Glucose galactose malabsorption formula and solids

• By MHart · Posted December 13, 2012
• 0 replies
• Good morning! My son is 6 months old and was diagnosed with ggm at 3 months old. We were started on Ross carbohydrate free formula ( Abbott) and he is doing amazing. We make fructose syrup and add it ...

Gardner's Syndrome - Diet Help Needed

• By Chesters_Mom · Posted November 26, 2012
• 0 replies
• My niece was just diagnosed with Gardner's Syndrome after her Dad was diagnosed. She has been having a lot of problems with her stomach with abdominal cramps, nausea and vomiting. I have been trying to ...

Daughter with HIDS

• By Kklynn · Posted October 10, 2012
• 0 replies
• My 16 year old has HIDS and she has been having a terrible time with oral ulcers. She has braces and they seemed worse since she had them but she is dealing with it ok. We us the "magic swizzle"to help ...

Is there any research of stem cells for neuropathic injuries???

• By ravitrina · New reply August 20, 2012
• 19 replies
• I am suffering from damage to my trigeminal nerve ...

I was born with Ocular Motor Apraxia

• By jmakehren · New reply August 7, 2012
• 18 replies
• I wanted to start this post for anyone out there who would like some help or advise about how to deal with OMA :) i am a college student and have struggled throughout the years and want to help others ...

on LPolycythemia Vera

• By cndygal1 · New reply July 18, 2012
• 25 replies
• My husband has been diagnosed with this disease and no one seems to know much about it. Interested in anyone that is familiar with this disease. Right now he is on pain medication, plus every two weeks ...

Stiff Person Syndrome

• By elvenflow · Posted July 11, 2012
• 0 replies
• The prescription cannabis extract Sativex is apparently effective for Stiff Person Syndrome in much the same way as it is for Issac's Syndrome (through its immune modifying properties). Sativex is approved ...

Hystioscytosis

• By ITSABOUTTIME · New reply July 5, 2012
• 1 reply
• My neice has this and I was just wondering if anyone here has or knows someone with it, I've read articles about it, but being an "orphan" disease, there are many questions that are unanswered. They treat ...

Anyone with experience regarding periodic fevers?

• By JRWL (Inactive) · New reply June 29, 2012
• 10 replies
• I am looking for any information anyone can give me about their experiences with periodic fevers. My son started with his first fever at 7 months. I then started to notice they were coming about every ...

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