Rare disease day 2022

Hello, my name is Jess and I am a Zebra!


Today is international rare disease day, a day which means so much to me as a person with multiple rare diseases! There are over 6000 rare diseases and so many people have to fight for care every single day meaning they have to teach and guide healthcare professionals rather than the other way round!

Many of the conditions in my diagnosis list are rare such as EDS, but I’m choosing to focus today on some of my conditions that don’t have their own awareness month..

Superior Mesenteric Artery Syndrome (SMAS) and Nutcracker Syndrome are both rare vascular conditions displayed in the diagram. SMAS involves the 3rd part of the duodenum (small intestine) being crushed between 2 major blood vessels and Nutcracker Syndrome is where the same blood vessels also crush the left renal vein. This leads to impairment of both these organ systems, causing pain, functional issues and so many other issues including contributing to the reasons why I am tube fed. This type of anatomy occur in 0.0013% of the population and has a mortality rate of 33% due to misdiagnosis and serious mismanagement (which I have personally experienced) and this is one of the reasons I have chosen to focus on these conditions today!

Living with a rare disease is hard! You come up against different battles than some people with more commonly known conditions experience, including a wait for diagnosis, years of unexplained symptoms, difficulty finding doctors to manage you due to how rare you are and problems getting doctors to understand and believe you.

Today I am showing my stripes for Rare Disease Day 2022. Although life with a rare disease is tough I believe I was put on this earth to help raise awareness and understanding of rare diseases and influence the way people with them are treated! I am a Zebra! A mystery, who doesn’t do anything the “standard way” and I am proud of the fact I have fought and advocated for myself in order to get to where I am today! Check out @rarediseaseuk where I am doing a social media take over for RDD tonight 9-10pm!🤍🦓

Rare is Many. Rare is Strong. Rare is Proud💗💚💙

#rarediseaseday #raredisease #showyourstripes