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CKJohnsonBkHello. I’m pretty quiet on here, but I would like to connect with other people in the Wilson’s Disease community. A hashtag yielded nothing, so I’m starting it here. If you see this, please amplify. <a href="https://newsie.social/tags/WilsonsDisease" class="mention hashtag" rel="nofollow noopener" target="_blank">#WilsonsDisease</a> <a href="https://newsie.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener" target="_blank">#raredisease</a> <a href="https://newsie.social/tags/rarediseases" class="mention hashtag" rel="nofollow noopener" target="_blank">#rarediseases</a> <a href="https://newsie.social/tags/rarediseaseadvocate" class="mention hashtag" rel="nofollow noopener" target="_blank">#rarediseaseadvocate</a> <a href="https://newsie.social/tags/livertransplant" class="mention hashtag" rel="nofollow noopener" target="_blank">#livertransplant</a> <a href="https://newsie.social/tags/liverdisease" class="mention hashtag" rel="nofollow noopener" target="_blank">#liverdisease</a> <a href="https://newsie.social/tags/wilsondisease" class="mention hashtag" rel="nofollow noopener" target="_blank">#wilsondisease</a>

Suswati Basu (巴苏) :verified:This is a huge deal. I believe the condition that I have <a href="https://mstdn.social/tags/HNPP" class="mention hashtag" rel="tag">#HNPP</a> is actually very prevalent but it's only ever tested if there are symptoms.In South Korea, however, it turned out there were 16/100,000 in a similar study. 100,000 babies to have genetic code mapped <a href="https://www.bbc.co.uk/news/health-63906892" target="_blank" rel="nofollow noopener" translate="no">https://www.bbc.co.uk/news/health-63906892</a> <a href="https://mstdn.social/tags/RareDisease" class="mention hashtag" rel="tag">#RareDisease</a> <a href="https://mstdn.social/tags/RareDiseaseAdvocate" class="mention hashtag" rel="tag">#RareDiseaseAdvocate</a>

Suswati Basu (巴苏) :verified:I'm going to start the <a href="https://mstdn.social/tags/hnpp" class="mention hashtag" rel="tag">#hnpp</a> tag as it's not here yet. I have it. It stands for Hereditary Neuropathy with Liability to Pressure Palsies. It's a rare degenerative neurological condition, closely related to <a href="https://mstdn.social/tags/multiplesclerosis" class="mention hashtag" rel="tag">#multiplesclerosis</a>. It means I'm losing my limbs, my legs are around 30% and arms about 50%. My spine is at around 50% now hence needing a wheelchair. I hope to raise awareness and allow others to find me here!<a href="https://mstdn.social/tags/rarediseaseadvocate" class="mention hashtag" rel="tag">#rarediseaseadvocate</a> <a href="https://mstdn.social/tags/ChronicIllnessDisability" class="mention hashtag" rel="tag">#ChronicIllnessDisability</a> <a href="https://mstdn.social/tags/MSWarrior" class="mention hashtag" rel="tag">#MSWarrior</a> <a href="https://mstdn.social/tags/DisabilityAdvocate" class="mention hashtag" rel="tag">#DisabilityAdvocate</a>

anne-marie creamer<a href="https://zirk.us/tags/Introduction" class="mention hashtag" rel="nofollow noopener" target="_blank">#Introduction</a>- I am an <a href="https://zirk.us/tags/artist" class="mention hashtag" rel="nofollow noopener" target="_blank">#artist</a> <a href="https://zirk.us/tags/Storyteller" class="mention hashtag" rel="nofollow noopener" target="_blank">#Storyteller</a>. Conjuring <a href="https://zirk.us/tags/Ghosts" class="mention hashtag" rel="nofollow noopener" target="_blank">#Ghosts</a>. Recently <a href="https://zirk.us/tags/SoaneMuseum" class="mention hashtag" rel="nofollow noopener" target="_blank">#SoaneMuseum</a> w ‘Dear Friend, I can no longer hear your voice’ & <a href="https://zirk.us/tags/CUBITT30" class="mention hashtag" rel="nofollow noopener" target="_blank">#CUBITT30</a> Victoria Miro Gallery for Cubitt, <a href="https://zirk.us/tags/London" class="mention hashtag" rel="nofollow noopener" target="_blank">#London</a>. <a href="https://zirk.us/tags/Academic" class="mention hashtag" rel="nofollow noopener" target="_blank">#Academic</a>, Senior Lecturer at Central St Martins <a href="https://zirk.us/tags/CSM" class="mention hashtag" rel="nofollow noopener" target="_blank">#CSM</a> for the <a href="https://zirk.us/tags/Art" class="mention hashtag" rel="nofollow noopener" target="_blank">#Art</a> Programme, & Convenor of new <a href="https://zirk.us/tags/UAL" class="mention hashtag" rel="nofollow noopener" target="_blank">#UAL</a> <a href="https://zirk.us/tags/HEARD" class="mention hashtag" rel="nofollow noopener" target="_blank">#HEARD</a> research hub - <a href="https://zirk.us/tags/Art" class="mention hashtag" rel="nofollow noopener" target="_blank">#Art</a> & design in relation to <a href="https://zirk.us/tags/Health" class="mention hashtag" rel="nofollow noopener" target="_blank">#Health</a>. <a href="https://zirk.us/tags/MedHums" class="mention hashtag" rel="nofollow noopener" target="_blank">#MedHums</a>. <a href="https://zirk.us/tags/Patient" class="mention hashtag" rel="nofollow noopener" target="_blank">#Patient</a>-Artist-Researcher. <a href="https://zirk.us/tags/RareDiseaseAdvocate" class="mention hashtag" rel="nofollow noopener" target="_blank">#RareDiseaseAdvocate</a>. <a href="https://zirk.us/tags/Ill" class="mention hashtag" rel="nofollow noopener" target="_blank">#Ill</a>-being. <a href="https://zirk.us/tags/SharedDM" class="mention hashtag" rel="nofollow noopener" target="_blank">#SharedDM</a>. Dual UK & <a href="https://zirk.us/tags/Irish" class="mention hashtag" rel="nofollow noopener" target="_blank">#Irish</a>, 🇮🇪 with foot in both, but heading west - ‘home’

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