I am a recent addition to this site, having been diagnosed earlier this year. I live in Tasmania Australia, and there are few on our island with this rare disorder. Reading through your posts and the patient and thoughtful replies of others got me wondering whether there is a chart or we could make one or put together a document about symptoms and what others have found useful, helpful and how they have perhaps even solved the problem. Anyone interested? I do feel this could be really helpful as we travel this journey and others join us. Meanwhile I wish you all well, stay safe. For anyone still wondering about getting vaccinated, I have had my first Pfizer shot and there was no issue. I was anxious about it. I do understand the second may produce some symptoms, so I will keep you posted.
All the best, here's a photo of our beautiful island at the other end of the world. This is Table Cape where tulips are grown at the foot of a lighthouse. Can you spot the lighthouse? I hope it's peaceful landscape diverts you for a minute and makes you feel good.
Written by
Magnolia999
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A beautiful part of the world. Your idea for some kind of aggregated information is an interesting one. There are symptom charts available but one developed within the group might be a good way to capture the range of experiences that might be useful for us and the medics? Our own piece of mini research. Certainly something to think about.
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