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Katie55

Updated 1y ago

Looking for Others with Sneddons Syndrome - Let's Connect!

SNEDDONS SYNDROME : is a rare progressive disorder affecting small - and medium-sized blood vessels. The disorder is characterized by the association of a skin condition and neurological abnormalities. Characteristic findings include multiple episodes of reduced blood flow to the brain (cerebral ischemia) causing mini-strokes or stroke and bluish net-like patterns of discoloration on the skin surrounding normal-appearing skin (livedo reticularis). Additional symptoms may include headache, dizziness, abnormally high blood pressure (hypertension), and heart disease. Lesions may develop within the central nervous system as a result of reduced blood flow to the brain, which can cause reduced intellectual ability, memory loss, personality changes, and/or other neurological symptoms. The combination of stroke symptoms and livedo reticularis differentiates this syndrome from other disorders. The exact cause of Sneddon syndrome is not fully understood. https://rarediseases.org/rare-diseases/sneddon-syndrome/ Hello, My name is Katie. I was diagnosed with Sneddons after having a TIA at 27 years old. Finally, after years of experiencing the above symptoms and having mottled skin, I found my answer. What a weight that was lifted off my shoulders. Unfortunately, there is nothing that can be done for it besides keeping your blood pressure stablized and being on a blood thinner/aspirin every day. I am reaching out to see if anyone out there on this app has this syndrome. If you do, would love to chat! ❤️ Thank you for taking the time to read.

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spookyspoonie

1y

I do not have Sneddons, but I do have a progressive brain disease that has no treatment (aside from beta blockers to stabilize my blood pressure). I can't provide the companionship that having the same disease would. But I can relate to some similar frustrations, if you're looking for friends who have similar-but-not-same problems 💕
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Healforhealth

1y

Hi there! I don't have this rare disease, but I can relate to some of the symptoms... My personal chronic illness escapade is mainly POTS related, but I am here to support you in any way I can 🙏❤️

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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