Discover Top Posts Tagged with #rarediseaseday2018

Today is rare diseases day! (28th Feb)

#RareDiseaseDay2018 #chiari malformation #ehlers danlos syndrome #My illnesses

#wegnersgranulomatosis #weggiewarriors #rarediseaseday2018 #autoimmunedisease

#weggiewarriors #wegnersgranulomatosis #rarediseaseday2018 #autoimmunedisease

#Repost @radha_inspire with @get_repost ・・・ Maria Dastur is a support group leader for The #Mastocytosis Society. #mastcelldisease #rarediseaseday2018

#mastcelldisease #mastocytosis #rarediseaseday2018 #repost

Today is the last day of February, which means it's rare disease day. A disease is called rare when less than 5 in 10.000 people are diagnosed with it, and it has to be life treating or chronic. In my case it means I have multiple rare diseases. The first one was a rhabdoïd tumor in my right kidney, about 1 in 12.000.000. After that I've got a sinus thrombosis and a vestibular schwannoma, both about 1 in 100.000. Becasue of this is developed idiopathic intracranial hypertension, also 1 in 100.000. A DVT in my arm, not very common (don't know the exact number). Also I have renal tubular acidosis and fanconi syndrome, causing severe electrolyte imbalance. Although isolated proximal (type 2) or distal (type 1) tubular pathologies are well characterized, a combined pathology leading to type 3 RTA is extremely rare. There needs to be more awareness for rare diseases and the complications they can cause. ------------------------------- #imawarethatimrare #raredisease #rarediseaseday2018 #icareaboutrare #intracranialhypertension #sinusthrombosis #vestibularschwannoma #rhabdoid #rhabdoidtumor #armthrombosis #pseudotumorcerebri #fanconisyndrome #butyoudontlooksick #rarediseaseawareness #rta #renaltubularacidosis #renaltubulardysfunction #electrolyteimbalance #hypokalemia #hypophosphatasia #lowpotassium #lowpotassiumlevels #lowphosphorus #lowphosphate #chronicillness #invisibleillness #spoonieproblems #weneedacure #totiredtofunction #chronichope