rarediseases raredisease chronicpain chronicillness enfermedadesraras radiology cancer cancerolvidado cancerraro forgottencancer genetics oncologia oncology radiologia rarecancer sarcomas sarcomasdepartesblandas spoonie traumatologia traumatology zebrastrong awareness bonesarcomas chronicillnesswarrior curesarcoma disability disabilityawareness enfermedadeshu findacure лгбеларусь
Time for a double! When I got diagnosed with a life-threatening type of #scleroderma in 2014, there was no cure. But we found an experimental treatment in the Netherlands. Today, 3 years after my second bone marrow transplant, the disease is almost non-detectable and I can lower the drug doses. Still some bugs in the system, but with a long relaxing summer to recover I’ll get there! Had to buy a double portion of ice cream to celebrate medical breakthroughs like this, that give hope to patients around the world! ❤️ #nevergiveup #alwayshope #innovation #rarediseases
definitely the best hospital admission ever!! Abbie grace has marfan syndrome along with many other comorbilities and it has been the best hanging out with her!! my trial with the temporary gastric stimulator has worked so my surgery for the permanent is august 9th! i was able to eat and it was amazing. i will still keep my gj tube but this drastically improves my symptoms!!
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#feedingtube #gastroparesis #rarediseases #chronicillness #smasyndrome #gjtube #inspiration #superiormesentaricarterysyndrome #tubie #dysautonomia #pots #eds #ehlersdanlossyndrome #hypermobility #dance