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Genetic Alliance

Rare disease and genetic conditions support group and discussion community

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Genetic Alliance

central pontine myelinolysis

In: Finding a doctor

Michele2017

central-pontine-myelinolysis-12

200128

My mom was diagnosed with central pontine myelinolysis, after correction of a hyponatremia. She´s in CTI for over 2 months, but the doctors don´t know what to do, since we live in Brazil there are no doctors specialized in this desease. Any help would be very appreciated, we are open to any new treatments and agree to use her informations to be published at study case. My mom is japanese ... Read More

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

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

Mac Tel Support

In: My disease has no treatment

kimn1954

mac-tel-support

200128

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

A COMMON SENSE ALTERNATIVE TO THE AHCA

simplee's journal

simplee

a-common-sense-alternative-to-the-ahca

There is an alternative to the American Health Care Act (AHCA) and the Affordable Care Act (ACA) that will provide health care for every American, while significantly lowering the cost of health insurance, covering all medical needs (even dental, vision, hearing, prescriptions, and medical devices) while raising the quality of care, and allowing every American to see whatever Dr. (or ... Read More

Inspire's New Search Engine

ErikInspire's journal

ErikInspire

inspires-new-search-engine

  • 44 Replies
  • Processing ...

I’m very happy to share with you Inspire’s new search engine. We believe the recent improvements that we have made will make it much easier for you to find what you are looking for. The search box at the top of the page (the magnifying glass if you are on mobile) will allow you to search across All Communities by default, or narrow it down to a single community that you belong to ... Read More

Hirschsprung's Disease & Colonic Inertia

Karagarcia12's journal

Karagarcia12

hirschsprungs-disease-and-colonic-inertia

On February 13, 2017, I went to see a Gastrointestinal Motility Specialist in Kansas City, Kansas. I was referred by my Gastroenterologist in Wichita, Kansas. I suffer from constant nausea, stomach discomfort and SEVERE Constipation. I have dealt with this since I was born. It was not until age 19 when my symptoms became severe and unmanageable. Currently I am 21 years old and have ... Read More

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Genetic Alliance

20-year-old man just diagnosed with 9p24 deletion.

In: Finding emotional support

Nic9p24

20-year-old-man-just-diagnosed-with-9p24-deletion

200128

Hello. I'm a 20-year-old man with several known health complaints (mental illness, autism, skin conditions, epilepsy). My psychiatrist sent me for genetic testing after I explained to her the recurrence of mental illness and neurological disorders in my family, and today I received a letter stating that I have 9p24 deletion. The clinic didn't send very much information that would be ... Read More

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