A Cowden syndrome interview , Cowden syndrome.

Jim's interview


How did all start?

Following my Brother having a Lhermitte Duclos de baulked. I was asked to look up CS and realized that I suffered a vast majority of the symptoms

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

Yes, I asked a Consultant to test me for it. I was told that he would look after me, but he did not. Following contacting Genetics Wales they arranged my Care

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

ENT, Neurology, Gastrology, dermatology and GP

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

Neurolologist

What have been your biggest difficulties?

Arguing with the Health Authority to resolve issue

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

Not really except I have had to take Medical Retirement


Dec 18, 2025

By: Jim

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