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Submitted by Elizabeth Fairburn on Sat, 12/08/2023 - 14:26
PermalinkTwo years ago I was diagnosed
Two years ago I was diagnosed with Cluster Headaches. Two years prior to that, I was informed that the hereditory (sp!) disease Fabry was in my family. Through mismanagement on both mine and the medical departments I was unable to get it confirmed whether I had it or not.
It has now been confirmed that I am a carrier and am suffering from Fabry. What I would be interested in, is has anyone else in the group got a family member with Fabry. There are about 850 people in the UK with Fabry and I know it is quite hard to be tested for it, however, one of the "symptoms" is "strange headaches" and weight loss as well as myriad of other problems .....
I am just wondering wether the two can be related? Thank you for any feedback on this.