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vestibular therapy

tallcrowe
  • By tallcrowe · New reply August 4, 2008
  • Discussion in Treatment and therapy · 7 replies
  • has anyone tried or even heard of vestibular therapy? with recommendations from both of my son's therapists we are approaching this therapy as a possibility. just wondering if anyone has had any experience ...

Hypomylination atrophy of the basal ganglia and cerebellum

JOSHYSMOM
  • By JOSHYSMOM · Posted August 2, 2008
  • Journal · 0 replies
  • MY son was recently diagnosed with Hypomylination of the basal ganglia and cerebellum. Does anyone have any info on this rare leukodystrophy ...

any one else undiagnosed?

tallcrowe

ALD Mom's who are carriers and Son's who have ALD

BMA
  • By BMA · New reply July 30, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 3 replies
  • I am almost 50 years old. I have a son who discovered he had ALD June 2004, his 4th year of college. We discovered he had Addison's disease when he was 13 years old but was never tested for ALD. It seems ...

If any One has Alexander disease as adult

Sarina
  • By Sarina · New reply July 30, 2008
  • Discussion in Alexander disease (AxD) - Adults · 3 replies
  • If so please contact me at let me know what your symtoms are? Ther testing me for it and try to figure things out. WAS diagnosed with Leukodstrophy. Thanks Sarina ...

livin each day

wordnerd58
  • By wordnerd58 · New reply July 29, 2008
  • Journal · 2 replies
  • I try to take it one day at a time these days. As things ge harder for me to keep up with I just try to do what I can that day and let the rest go. For anyone who ever knew before that is the exact opposite ...

How Did You Tell an Elderly Family Member About MLD?

carolrn
  • By carolrn · New reply July 26, 2008
  • Discussion in Family and friends · 3 replies
  • Our family has recently received the devastating news that our little "Abby" (my grand niece), 23 months old, has MLD and that this disease is degenerative and fatal. My mother, Abby's great grandmother ...

today, July 25, 2008 ALD son

BMA
  • By BMA · Posted July 25, 2008
  • Journal · 0 replies
  • I am almost 50 (this year) and have a son, 26 years old. He was diagnosed with ALD at age 22 during his 4th year of college. He had a a bone marrow transplant October of 2004 at the University of Minn ...

HDLS

Summer630
  • By Summer630 · New reply July 25, 2008
  • Discussion in Other leukodystrophies · 1 reply
  • I have a family member that has been diagnosed with HDLS. Has anyone heard of this disease? She is 39 years old and has 2 children. Our family went for genetic testing in 2006. The Mayo Clinic is who ...

getting by

wordnerd58
  • By wordnerd58 · New reply July 25, 2008
  • Discussion in CADASIL · 22 replies
  • I am a 50 year old wife and mother. I have been living with this disease for about 5 years. 2 of that was spent ttrying to figure out what was wrong with me. Doctors were starting to think I was nuts ...

Team Hoyt

here4Matt
  • By here4Matt · Posted July 22, 2008
  • Journal · 0 replies
  • My mother just sent me this link about Team Hoyt, a father who does for his son all the physical things the son cannot on his own, due to CP. I've learned that so many leukodystrophies are often misdiagnosed ...

Support your group and raise awareness with badges

Walter
  • By Walter · New reply July 16, 2008
  • Journal · 30 replies
  • Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

Alexander disease

bkabo
  • By bkabo · New reply July 14, 2008
  • Journal · 11 replies
  • Could anyone give information on Alexander disease? If you know anybody with this disease or know someone who suffered from this disease I would like to get in contact. I have a 17 yaer old son suffering ...

HDLS

Summer630
  • By Summer630 · Posted July 12, 2008
  • Journal · 0 replies
  • Has anyone heard of Hereditary diffuse leukoencephalopathy with spheriods ?( HDLS) I have a family member that has been diagnosed with this disease. She is 39 years old. Just looking for anyone that might ...

My Daughter Reese (4) has MLD.

4Reese

Upcoming improvements to the messaging system

Walter
  • By Walter · New reply July 7, 2008
  • Journal · 23 replies
  • Hello everyone. I'm writing to let you know about some long overdue improvements that we'll be making to this site's messaging system later this week. The messages section is the most frequently visited ...

Love and Science 2008 - Next Month

applepie1281
  • By applepie1281 · New reply June 30, 2008
  • Discussion in Family and friends · 6 replies
  • My husband and I are making plans to attend the conference next month, 7/17-7/19. This will be our first trip to Dekalb for the conference, as our son was only recently diagnosed with Alexander's Disease ...

New feature - profile completeness gauge

Tasha
  • By Tasha · New reply June 25, 2008
  • Journal · 4 replies
  • Greetings from TeamInspire! I'm your friendly neighborhood designer, here to tell you about some new features. You might notice that today we revamped your member homepage - https://www.inspire.com/member-home.pl ...

Improvements to the message system are complete

Walter
  • By Walter · New reply June 22, 2008
  • Journal · 14 replies
  • Hello everyone. Just a quick note to let you know that the improvements to the message system that I wrote about previously are complete. You can check them out now. You'll notice that we've grouped your ...

Living with AMN

Pio
  • By Pio · New reply June 22, 2008
  • Discussion in Adrenomyeloneuropathy (AMN) · 3 replies
  • I'm 44 years old and using a cane. my brother died when he was 51 as it turned into ALD. if anyone wants to talk, just jump right in. God bless you all ...

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The United Leukodystrophy Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. The United Leukodystrophy Foundation Support Community is sponsored by the United Leukodystrophy Foundation in partnership with Inspire.