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Genetic Alliance

Rare disease and genetic conditions support group and discussion community

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Genetic Alliance

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200128

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

Genetic Alliance

To fight for opioid therapy, an Inspire member calls for action

Chronic-Inspire's journal

Chronic-Inspire

to-fight-for-opioid-therapy-an-inspire-member-calls-for-action

200128

By Radha_Inspire Digital Editor, Inspire “I think it is time to organize ourselves into a lobbying group somehow.” Constance Small (acorns02459) wrote that on October 19th on Inspire as part of a conversation about what happens when it becomes difficult or impossible to get opioids to treat chronic pain. “I would be very happy to join anyone who would like to organize a campaign to ... Read More

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Genetic Alliance

“But you look so good”: Hard to avoid, hard to answer

Chronic-Inspire's journal

Chronic-Inspire

but-you-look-so-good-hard-to-avoid-hard-to-answer

200128

  • 265 Replies
  • Processing ...

By Radha_Inspire Digital Editor, Inspire Among the many things that people who have a health condition don’t want to hear, “but you look so good” can be one of the most insidious. As Lisa Parker described in a recent essay at Stanford’s Scope blog called "'But you look so good': Living with an invisible illness", this type of well-meaning remark plays on insecurities about a body that ... Read More

Genetic Alliance

Adults With Imperforate Anus

In: Finding emotional support

bettym1

adults-with-imperforate-anus-1

200128

I had an artificial anal sphincter implanted at 58 after my original reconstructed sphincter was no longer functional. This was a long journey and has been somewhat successful. Really could of used others to talk to while on the journey but could find nothing. Would like to try and fill that gap. Are there others out there with the same experience and desires for support ... Read More

Genetic Alliance

Hello, everyone!

Radha_Inspire's journal

Radha_Inspire

hello-everyone-95

200128

Hello everyone! My name is Radha and I am the digital editor at Inspire. We’d like to share some news about an editorial initiative that we hope will be of use to you. Your community is a space where you can express your thoughts, seek support, and share information with fellow members, and will, of course, continue to be. My goal is to take cues from your discussions, your questions ... Read More

Genetic Alliance

Mac Tel Support

In: My disease has no treatment

kimn1954

mac-tel-support

200128

  • 6,806 Replies
  • Processing ...

This discussion was started in 2012 and has over 150 members from all corners of the world who have been diagnosed with Idiopathic Macular Telangiectasia Type 1 or 2, which it is important to note, are different diseases. Some discussion members are included in the MacTel Project. Some participate in various studies of the diseases and potential treatments. Some are researching the ... Read More

Genetic Alliance

Why asking for help is so hard

Chronic-Inspire's journal

Chronic-Inspire

why-asking-for-help-is-so-hard

200128

By Radha_Inspire Digital Editor, Inspire People ask each other for help all the time – at work, among friends, and at home from partners and family, for example. But when all parties are healthy, asking for help feels reciprocal – the asker may be indebted for a short time but eventually they will be ready and able to return the favor. In the context of illness, especially cancer or ... Read More

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Genetic Alliance

Hi. I'm new and I have ectrodacyly

In: My disease has no treatment

Mackenzi

hi-im-new-and-i-have-ectrodacyly

200128

Hi. I have ectrodacyly. I am the only one in my school who has it out of 950. Probably 1/4 of the school makes fun of me for it which has caused depression, anxiety, borderline personality disorder, self -harm and suicidal thoughts. I have reached out to the school social worker and she told me about this site and now I joined lol. I hope it's as great as it sounds ... Read More

Genetic Alliance

First trip to see Dr. Afrin

In: Getting a diagnosis

Astew0828

first-trip-to-see-dr-afrin

200128

Hello Everyone! I am getting ready to start my first road trip to see Dr. Afrin. I am excited, scared, and nervous for so many reasons! I just have a few questions for those of you that have been lucky enough to see him. 1) What do I need to take with me as far as medical records, lab work, etc? 2) What do I need to know before I go? 3) What can I expect? 4) Any other advice? This ... Read More

Genetic Alliance

Progressive Encephalomyelitis with Rigidity and Myoclonus

In: How my disease has changed my life

Susan-76

progressive-encephalomyelitis-with-rigidity-and-myoclonus

200128

My fiancée spent the last 5 months in the NICU. He was diagnosed with PERM and SPS. He almost didn't survive. He is home now. This is an extremely rare autoimmune disease and I'd really like to find someone who has this disease or knows someone with with it. I'd like to hear about the onset of the disease from someone else and I'd also like to know of others prognosis and daily living ... Read More

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