SMA: why adult support must keep up with medical progress + + +

https://rarerevolutionmagazine.com/sma-why-adult-support-must-keep-up-with-medical-progress/ Lassi Murto was diagnosed with spinal muscular atrophy as a child and is now navigating adult life with SMA. He shares his experience of what it is like when the systems around a condition don’t match the medical progress and improved prognosis this brings Written by Lassi Murto, chair of SMA Finland Understanding comes first. Decisions follow. Your clinical trial navigation hub, guiding you with decision support, every step of the way. https://app.trialport.com/?utm_campaign=RareRevITP&condition=259 For a child with severe epidermolysis bullosa (EB), wound care can take hours every week, sometimes daily. Who carries that work shapes not only how the disease is managed, but who the family becomes around it. Ryan Hultman and his wife Renata, Vancouver, Canada, have led their daughter Raquel’s dressing changes for fifteen years. Angélique Sauvestre, mother to Amélie, and based in France, has built her advocacy on the conviction that no parent should be expected to. The two paths look very different. The parents at the end of them say the same thing: that all roads lead to judgment‑free, personal choice. https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=e0508b93-1cde-4785-b9ae-c36724bde55a&pnum=26