"To Know the Joy of Giving"
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February 2012
[Guest post] Ataxia – a Rare Disease Day Post
November 2011:Living with Ataxia on WelshFocus
March 2010: Living with Ataxia on Race Online 2012
1/23/10: LivingWithAtaxia Featured on SavantMD.com
8/31/09: LivingWithAtaxia Mentioned on About.com
8/12/09: OrganizedWisdom.com's Favorite Ataxia Community OrganizedWisdom.com.
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Started by Charmaine in General 1 hour ago. 0 Replies 0 Likes
This is a question deep down in my heart.Unfortunately I got such kind of "friends".When I was suspected with ataxia, I was shocked and almost collapsed. During the time of waiting genetic test result, I called my friends and shared my feelings,…Continue
Started by MissCake2 in General. Last reply by Charmaine 1 hour ago. 50 Replies 1 Like
I'm just curious about those of you who have had the genetic testing for ataxia done... What made your doctor decide to do a genetic test? Is it expensive? Did insurance cover it? I have been diagnosed with Gluten Ataxia, but it still doesn't add…Continue
Started by Lori in General. Last reply by Kati 1 hour ago. 7 Replies 1 Like
I am 51 with Ataxia that is getting worse with age. It helps so much to hear other people's stories. I Thank all of you for sharing. I was starting to crawl in a hole till I found this sight. I try so hard to keep my head up!Continue
Started by fc in General. Last reply by Jeannie Ball 15 hours ago. 12 Replies 1 Like
I was diagnosed with ATAXIA (SCA) in January. I am facing many limitations, like miobility and loss of balance, falling down and hitting my head. Furthertmore, I am looking for a job and when they see my disability, they just saY: "You hear…Continue
Tags: work, employment, information, Requesting
Charmaine posted a discussion
Charmaine replied to MissCake2's discussion Have you had genetic testing for ataxia done?
Kati replied to Lori's discussion It Helps to Hear Peoples Advice
Lori replied to MissCake2's discussion Have you had genetic testing for ataxia done?
Steph posted a status
John "JC" Colyer posted a blog post| 1 |
It Helps to Hear Peoples AdvicePosted by Lori on May 26, 2012 |
| 2 |
Requesting informationPosted by fc on May 26, 2012 |
| 3 |
Have you face discrimination after diagnosed with ataxia?Posted by Charmaine on May 28, 2012 |
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Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
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Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
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Ataxia (International)
Ataxia (U.S.A.)
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Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
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Psoriatic Arthritis (PsA)
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Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
Posted by John "JC" Colyer on May 27, 2012 at 8:45am 1 Comment 0 Likes
Something I never thought I’d say!!
Having a disability has different dimensions of struggle:
1. physical
2. Emotional/ Mental
3. Everything else!
Its most times…
Posted by Armando Abrero on May 27, 2012 at 8:10am 0 Comments 0 Likes
Meet Sam Bridgman, a 21 year-old junior finance major at University of Portland. He is a native of Seattle, where he grew up like any sports loving boy but more partial with baseball and basketball until he started showing signs of being ill. At…
ContinuePosted by Marty on May 27, 2012 at 7:58am 1 Comment 0 Likes
I would like to say a big Salamat(Thank You),to all the filipino friends who help out on this online group.My wife is a filipina,and i know that to be a good carer takes total dedication.It can be difficult sometimes for the carers,friends and…
ContinuePosted by Armando Abrero on May 27, 2012 at 2:35am 0 Comments 0 Likes
Be prepared for some heart warming.
Sam Bridgman shares how the feeling of love makes him complete while coping with Friedrich Ataxia. Click on link below to watch the…
Continue
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