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AMN frustration

AMN-MNDUDE
  • By AMN-MNDUDE · New reply 1:01 pm
  • Discussion in Adrenomyeloneuropathy (AMN) · 3 replies
  • I have AMN. I had been getting around with just a cane. But last Sunday, I lost my balance on a set of stairs and fell. I have a small fracture on my knee. Now I am getting around with a walker. My second ...

Where do we go from here?

2tired2think

Take Time to Realize

samshdls
  • By samshdls · New reply 11:42 am
  • Discussion in Living with a leukodystrophy · 6 replies
  • During my husbands illness, SamsHDLS, I struggled to find God's plan in Sam's disease. Why did this terrible thing happen to him, and our family? Why God was not taking away the disease, was a question ...

AMN with brain involvment.

AA
  • By AA · New reply yesterday at 9:49 pm
  • Discussion in Treatment and therapy · 1 reply
  • I am looking forward to tlak to people with AMN who has brain involvment. How it usually works? AMN without brain involvment and then brain involvement OR everything starts together? Anybody's help is ...

CONFUSED....???

mylilangel
  • By mylilangel · New reply yesterday at 2:35 pm
  • Discussion in Newly diagnosed · 4 replies
  • My daughter just turned 8 on Jan. 4th, 2010. She recently was diagnosed with "non-specific" Leukodystrophy on Oct. 5, 2009 based on her MRI finding. They haven't performed any other tests to try to figure ...

A study for better testing techniques

TaSad
  • By TaSad · New reply yesterday at 1:46 pm
  • Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 3 replies
  • Dr.Vanderver at the DC Childrens National Medical Center is heading a study to establish new tests for leukodystrophies. Finding out if it is a leukodystrophy and what type is the 1st step in ever finding ...

AMN

AA
  • By AA · Posted February 7, 2010
  • Discussion in Treatment and therapy · 0 replies
  • Hi, I wanted to ask AMN patients who has walking problems if changes can be seen on spine MRI and what are the changes? I appreciate everybody's help ...

Faith and love

andreayhvh
  • By andreayhvh · New reply February 6, 2010
  • Discussion in Alexander disease (AxD) - Parents · 3 replies
  • I´m Andrea from Brazil and have a sun Nicholas that has Alexander desease, but don´t have any information about this sindromy. He get a evolution but still speak yet and don´t walk alone. It´s very ...

I Believe in miracle

andreayhvh
  • By andreayhvh · New reply February 6, 2010
  • Discussion in Alexander disease (AxD) - Parents · 3 replies
  • Well, I believe in miracle and I believe in my Lord. I don´t stop to speak the Jesus´s message. I am completely yours Sir I does not matter what it caused me to the life I love you lord I go you with ...

AMN progression

Joy2theWorld
  • By Joy2theWorld · New reply February 6, 2010
  • Discussion in Adrenomyeloneuropathy (AMN) · 2 replies
  • I need to talk to other family members caring for adults with AMN. I have a 33-year-old son who is seriously affected, and he lives with his dad and me. Please contact me. Best regards, Joy ...

Bringing Awareness to Leukodystrophies

TaSad
  • By TaSad · Posted February 6, 2010
  • Discussion in Living with a leukodystrophy · 0 replies
  • Since leukodystrophies are rare, we really need to use the power of PR. I am sure you all are doing this anyway, but mention this to EVERYONE you know- even have friends and family mention the word Leukodystrophy ...

Has anyone tested negative for MLC1 gene but told they still have MLC?

TaSad
  • By TaSad · Posted February 6, 2010
  • Discussion in Megalencephalic leukodystrophy with subcortical cysts (MLC) · 0 replies
  • The doctors tell me there are cases of MLC that are void of the MLC1 gene. This leads them to believe there is more than 1 gene involved in the disease. The other genes haven't been identified yet. I ...

Leukodystropy of unknow etiology

Lisa44
  • By Lisa44 · New reply February 6, 2010
  • Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 33 replies
  • I was wondering how many other people are out there with a child who has a leukodystrophy of unknown etiology. I would love some feedback from those of you who do. My son was diagnosis about 7 years ago ...

My 10 year old son was just diagnosed with Adrenoleukodystrophy

sunnydazeokla_01
  • By sunnydazeokla_01 · New reply February 6, 2010
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 13 replies
  • My son Anthony was diagnosed last Friday with Adrenoleukodystrophy. I am scared to death. I am trying to be strong for my baby, but it is tearing my heart to pieces. I am praying for a miracle healing ...

Female ALD carrier denied life insurance

Quiller
  • By Quiller · New reply February 6, 2010
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 5 replies
  • I have just tried to renew my term life insurance policy and was denied based on my x linked ALD . I am a symptomatic female carrier but have been told by doctors this has no bearing on life expectancy ...

Do you have a child diagnosed with CACH?

lexismom

4H SYNDROME FAMILIES

tallcrowe
  • By tallcrowe · New reply February 4, 2010
  • Discussion in Other leukodystrophies · 18 replies
  • Hi Everyone! I hope that you and your families are doing well as can be! I feel like with so few 4H families we have so much that we can we share with each other. There has been a site created for a very ...

update

wordnerd58
  • By wordnerd58 · Posted February 4, 2010
  • Journal · 0 replies
  • It has been almost a year since my last journal entry, and alot has changed. I have just had my eye exam and my eyesight is getting worse but that might be old age. The headaches have returned and they ...

Looking for others

anniechang

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2tired2think

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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.