The National Fabry Disease Foundation Support Community connects individuals with Fabry disease, family members, friends and caregivers for support, inspiration and community building... More about this group

pain relief from opiates

spectrum84
  • By spectrum84 · New reply April 21, 2014
  • Discussion in Living with Fabry disease · 1 reply
  • Hello everyone. I'm sure everyone here has been through numerous pain meds that didn't work like I have. Now my doctors are going to start me on pain killers like percocet. Now I'm all for not being in ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · New reply March 19, 2014
  • Journal · 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • Journal · 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • Journal · 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

help with finding a new primary doctor in Columbia experienced with Fabr

jdaidone74
  • By jdaidone74 · Posted March 17, 2014
  • Discussion in Finding healthcare providers and insurance issues · 0 replies
  • I live near downtown in columbia, sc. I really seem to be having trouble finding a p doc who has experience with Fabry's. Any suggestions appreciated! Happy St Patrick's day to you all ...

The Inspire Q&A: Inspire talks with Kathy Nieder, MD

John2
  • By John2 · New reply February 23, 2014
  • Journal · 36 replies
  • The Inspire Q&A: Inspire talks with Kathy Nieder, MD By John Novack, Communications Director, Inspire Dear members, We at Inspire are pleased to bring you the latest in a series of interviews with people ...

Don't give up with healthy food

Grannycritch
  • By Grannycritch · New reply February 18, 2014
  • Journal · 2 replies
  • We have been on the juice for months and now my husband has decided to stop all painkilling medication. He still has replagal once every two weeks by infusion but he was so ill with side effects from ...

Introducing Photos for Inspire

Walter
  • By Walter · New reply February 13, 2014
  • Journal · 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

Take Our Surveys contest

Jerry_at_NFDF
  • By Jerry_at_NFDF · Posted January 29, 2014
  • Discussion in Events and news · 0 replies
  • Hi everyone, If you get our newsletter or follow our face book page you probably already know we started a program called the Take Our Surveys contest for people with Fabry disease 18 years old or older ...

Weight Gain

Chrissie49
  • By Chrissie49 · New reply January 15, 2014
  • Discussion in Treatments · 3 replies
  • Hi Everyone I hope you're all feeling as good as can be? I have a question that I really need some answers to - I've been taking ERT for about 9 months and I've gained about 15 lbs. Has anyone else had ...

Dry eyes dry mouth

broony37
  • By broony37 · New reply January 15, 2014
  • Discussion in Symptoms · 1 reply
  • Please.... Does anybody else suffer with dry eyes and dry mouth?? It's driving me mad ...

low iron?

spectrum84
  • By spectrum84 · New reply January 10, 2014
  • Discussion in Living with Fabry disease · 4 replies
  • Does anybody here know if low iron is a problem? I have been anemic for a long time but I guess my iron is low enough to need an iron IV tomorrow. They don't seem to be concerned about finding the cause ...

Living with Fabry

AGOC
  • By AGOC · New reply January 10, 2014
  • Journal · 3 replies
  • I recently stopped working, and decided to try my hand at writing , below is our story. Over the last few years , I have had an unbelievable journey, and I am still here to tell the story. I hope this ...

New infographic: Inspire Rare Disease Health Communities at a Glance

John2
  • By John2 · Posted January 9, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 1/9//13 Dear members, I am writing to share with you a new infographic that Inspire published yesterday: Inspire Rare Disease Health Communities at ...

Thank You, From Inspire

Walter
  • By Walter · New reply December 3, 2013
  • Journal · 108 replies
  • Hello everyone, As Thanksgiving approaches, all of us at Inspire would like to take a moment to thank you for being part of our community. While we wish no one had to deal with the serious health issues ...

Life, Love, and the Pursuit of a Pain-free Night

Khatn
  • By Khatn · New reply November 19, 2013
  • Journal · 61 replies
  • This past week has given me a load of rows to hoe and think about. One week ago, my darling (and she truly is) 2-y-o Maine Coon kitten (don't care if she's 2, she's still my little kitten) came to me ...

Waiting for results

xHelenx
  • By xHelenx · New reply November 6, 2013
  • Discussion in Living with Fabry disease · 4 replies
  • Hi I'm a 38 year old female I have been poorly for the last 7 years. I am just waiting for my results if I have Fabry disease. My symptoms are nerve damage in my hands and legs numbness and burning mainly ...

fabry disease

xHelenx
  • By xHelenx · Posted November 2, 2013
  • Discussion in Testing, diagnosis, and inheritance · 0 replies
  • How long does it take to get diagnosed with Fabry disease? My specialist is investigating this now. Thank you. Helen ...

balance problems

J1975
  • By J1975 · New reply October 7, 2013
  • Journal · 4 replies
  • Hi Has anyone found anything to help with balance problems? I have had these for the last year or so, and no one can explain it Thanks Jason ...

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About this community

The National Fabry Disease Foundation Support Community connects individuals with Fabry disease, family members, friends and caregivers for support, inspiration and community building. This community is sponsored by the National Fabry Disease Foundation, an Inspire trusted partner.