Unverricht Lundborg disease, EPM1

[judyh]

Hi
I'm still looking for people with ULD. My daughter has it and we are looking for others. It's sometimes known as Baltic myoclonus, Mediterranean myoclonus, or Ramsay Hunt syndrome type 2. Thanks.
Judy

[strawdog]

I don't have this form of myoclonus, but my heart goes out to you and your daughter. Sending hugs your way!

[Ellie]

Bumping this up for Judy!

[moose53]

((((((Judy)))))),

I pulled together some URLs when you originally posted this. I must have forgotten to post the link because I've just gotten over a problem with my computer crashing constantly.

Here's my bookmarks:
http://public.murl.com/moose53/HEALTH_AND_MEDICAL/EPILEPSY/UNVERRICHT-LUNDBORG_(EPM-1)
(press the [page-down] key four times)

Since you've probably been wandering around for awhile, you probably have seen a lot of this.

I noticed some researchers/specialists names in there -- make sure you get your daughter's face in front of them. If you see any name of a scientist researching EPM-1, make sure they know about your daughter -- send them a picture and a one-page history.

I've checked all the links and they're all active. I wish I could do more. I hope I've helped a little bit.

Bless you both. Hugs.

Barb

[neobazz]

Judy,

I sent you yesterday an e-mail to your Hotmail-address, because my girlfriend suffers from ULD.

I hope to hear from you soon, you can contact me on neobazz@gmail.com

Jeroen

[pinkribbongirl]

Hi JudyH, I'm new here, My daughter has Ramsay Hunt Syndrome.
She was diagnosed in 12/05. It's been an up and down thing. I hope your daughter is doing well. It's very unusual for young people to have this.
ttyl,
Pink Ribbon Girl