CKJohnsonBk<p>Hello. 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">#<span>WilsonsDisease</span></a> <a href="https://newsie.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>raredisease</span></a> <a href="https://newsie.social/tags/rarediseases" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>rarediseases</span></a> <a href="https://newsie.social/tags/rarediseaseadvocate" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>rarediseaseadvocate</span></a> <a href="https://newsie.social/tags/livertransplant" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>livertransplant</span></a> <a href="https://newsie.social/tags/liverdisease" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>liverdisease</span></a> <a href="https://newsie.social/tags/wilsondisease" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>wilsondisease</span></a></p>
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#rarediseaseadvocate
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Suswati Basu (巴苏) :verified:<p>I'm going to start the <a href="https://mstdn.social/tags/hnpp" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>hnpp</span></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="nofollow noopener" target="_blank">#<span>multiplesclerosis</span></a>. </p><p>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!</p><p><a href="https://mstdn.social/tags/rarediseaseadvocate" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>rarediseaseadvocate</span></a> <a href="https://mstdn.social/tags/ChronicIllnessDisability" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllnessDisability</span></a> <a href="https://mstdn.social/tags/MSWarrior" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MSWarrior</span></a> <a href="https://mstdn.social/tags/DisabilityAdvocate" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>DisabilityAdvocate</span></a></p>
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