Sara, Collaborate Essex Forum Member, is a guest blogger this month, sharing her story and why she decided to join the forum to help make positive change for those living with disability in Essex.
Collaborate Essex Forum Member, Sara
I decided to join the Collaborate Essex Forum after being put in contact with Healthwatch Essex by my case-worker at Help For Heroes.
I suffer from three co-morbid and rare conditions which have led to considerable disability. I have Ehlers Danlos (EDS), Postural Orthostatic Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS). It’s taken me over five years to get all of my conditions diagnosed and I now take a concoction of 20 different tablets, drops and sprays a day to keep myself (reasonably) stable. Living with EDS and PoTS is challenging enough, but add MCAS into the mix and life becomes very difficult indeed.
I have spontaneous allergic-type reactions to triggers which change not just day-by-day, but hour-by-hour, even though I’m only actually truly allergic to pollen. Having MCAS means that my mastocytes (a type of blood cell) are constantly activated, so they release a steady stream of histamine, leukotrienes and other chemicals into my blood which lead to physical symptoms. I experience swelling in my face, a burning rash that spreads across my entire body, blood pressure drops, airway issues, gastro-intestinal issues and brain-fog on a daily basis due to MCAS. PoTS gives me dizziness and fainting, whilst EDS means that my joints spontaneously dislocate. What makes things even worse is that my disability is pretty much invisible to other people – when my face isn’t swollen – and really difficult to explain.
I wanted to join the Forum because I’ve always believed that problems should be solved by those who see them. There is no point in moaning about the world if you aren’t prepared to put in the work to change it. There are lots of invisible disabilities and plenty of people who are struggling to access appropriate diagnostic and care pathways. I felt that joining the Forum would give me a chance to try to improve things for people with invisible disabilities and rare diseases living in Essex, by giving me the opportunity to speak with people in a position to effect change in our county.
Medical professionals and government officials, let alone the general public, can’t be expected to help if they don’t know that there’s a problem in the first place. The Forum has given me a chance to speak directly to these people and other volunteers, so that we can educate and collaborate together to create a better future for everyone.
If you would like to share your story and lived experiences like Sara, click here to see how you can get involved and become a Healthwatch Essex Ambassador. Click here for more information about the Collaborate Essex Forum.