A Cadasil (Cerebral Autosomal Dominant Arteriopathy With Sub-Cortical Infarcts And Leukoencephalopathy) interview , Alternating Hemiplegia Of Childhood.

Alicatuk1's interview


How did all start?

Lots of severe headaches, nausea, fainting as a child. Left side paralysis. Flashing in eyes at approx age 9 or earlier.

Do you already have a diagnosis? How long did it take you to get it?

Yes, 52 years.

For what medical specialties have you been treated? What has been the most useful specialty for your?

Primary dr, rheumatologist, neurologist, nerve specialist, urologist, psychiatrist, physical therapy, etc...

What has been the most useful thing for you so far?

Nothing...waiting for that to start.

What have been your biggest difficulties?

Being wobbly, working! Migraines lasting 4 days or more.

How has your social and family environment reacted? Have your social or family relationships changed?

Negatively...have to cancel a lot of activities. Not reliable. Yes.

What things have you stopped doing?

Everything...mostly alone now. Pretty depressing.

What do you think about the future?

Doesn’t look good. Quiet

So far, which years have been the best years in your life? What have you done during them?

Late teens, early 20’s. before kids and marriage. Lots of free time with kids. After kids... body hurt more and more migraines. More stress

What would you like to do if you didn’t have your condition?

Travel, go out with friends enjoy life and know I wouldn’t have a headache

If you had to describe your life in a sentence, what would it be?

Drama, unhealthy, codependent

Finally, what advice would you give to a person in a similar situation?

Hang in there, once you get your label, you can finally start looking into therapies.

Interview Cadasil (Cerebral Autosomal Dominant Arteriopathy With Sub-Cortical Infarcts And Leukoencephalopathy)

Nov 3, 2019

By: Alicatuk1

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