Posted by: Brainy | 2003/02/20

Tuberous Sclerosis

Hello, this is my 2nd mail to you.

I hope you have not forgotten about us. My loved one has Tuberous Sclerosis and it's killing her. Where in Cape Town can I take her for help please.

Thank you

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Our expert says:
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Brainy, I’ve been sick for the last week or so and I might have missed your second question. The first question I replied to with the following:

2/15/2003 8:31:00 PM
SubjectTuberous sclerosis - Bourneville's diseaseQuestionThis is what I already know :tuberous sclerosis is an autosomal dominant disease characterised principally by the presence of hamartomas of the brain (tubers), retina (phakomas), and viscera, mental retardation, seizures, and adenoma sebaceum. It is also called Bourneville’s disease and epiloia. A multi system disorder is a disorder that affects more than one organ system in the body. My wife has this, we are not on a medical aid as like most South Africans, we cannot afford it.(Nobody's fault)We live in Cape Town, I beg you, please, who can I email or contact to get more info or find out what my wife can take to ease the pain in her body (neck and head mostly), please, we are at your mercy.I thank you for any help you may provideGod blessBrainyPosted byBrainy

Brainy, if you don’t have a medical aid, the best would be to make an appointment for her at the neurology department at Groote Schuur Hospital. The professors there should be able to help. If you have any specific questions, you’re welcome to ask and I’ll see if I can help. Good luck.
PS. Please post your reply as a new question and not below my reply because I won’t get your reply if you do. “

Please repost your second question as somehow it slipped through. I won’t take so long to reply to your question again as I’m busy getting better and don’t spend all my time in bed anymore. Good luck.

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