Help raise funds for vasculitis uk

Ellies story : It all started in November 2022 with a recurring pain in the left side of my temple and jaw. The new year and 2023 came around, I started to really struggle with fatigue and the only way I could describe how I was feeling at the time was “a 90 year old in a 21 year olds body” - I went to the doctors continuously knowing something wasn’t right and I kept being told I was anaemic and my vitamin D was low so I carried on thinking i was healthy and normal. Around April time, I started to experience the jaw and temple pain again but this time the pain was also in my left arm. I could barely do anything with my left arm (I still struggle with this a lot). I couldn’t eat, I lost a stone within 4 weeks and this for me was dangerous being only less than 8 stone to start with. My mental health started to deteriorate as I really thought I had health anxiety and all of these symptoms were in my head. I became dependent on ibuprofen because that was the only thing that was taking the edge of the pain. I went back to the GP in May, they ran blood tests and my ESR/CRP levels kept coming back high - I was told that this was just probably an infection in my body so I was given different courses of antibiotics which did not bring my levels down. My GP brought me in after the last course of antibiotics and advised me to go to the hospital. I went into the hospital to be told that I had no working pulse in my left arm, I had numerous scans and blood tests. The most important would be the CT scan which showed my diagnosis. On May 31st 2023 I was diagnosed with Takayasus Arteritis, a rare disease that only affects one in a million people (Takayasu's arteritis (TAK), is a rare form of vasculitis disease involving inflammation in the walls of the largest arteries in the body: the aorta and its main branches. Inflammation leads to narrowing of the arteries, and this can reduce blood flow to many parts of the body) I was admitted onto a ward and told lots of scary information that my 21 year old mind could not comprehend. If I carried on not knowing what was wrong with me, I either wouldn’t be here/ended up in intensive care. I stayed in hospital for a week and during that week, nothing sunk in. I would look at my mam and dad cry and not understand why they were so upset (obviously looking back, I do understand now but at the time I was completely overwhelmed and confused) Once I was discharged, I was given a treatment plan which i’m still undergoing until I hopefully go into remission I’m still going through a tough time mentally, which I don’t enjoy opening up about to my friends/family but I am learning to try and talk about it more. The steroids that i’m taking alongside my treatment have a lot of physical side affects, my face and body have completely changed and at 22 years old, this is a big thing to try and accept. I’m so thankful for the drugs that are saving my life, but also still hold that grudge against them when i sometimes struggle to leave the house because i’m so self conscious about my appearance. I’m also immunosuppressed which means i’m at serious risk of infection meaning i can’t go anywhere with large crowds = 0 social life i’ve never been the biggest drinker/party girl, but i did enjoy a night out with my friends now and again, so some weekends it does get me down knowing i can’t do this like i used to but i’ve definitely found the beauty in enjoying the simpler things in life. I hope my story will share some awareness, if you think something isn’t right with your health/body please don’t give up! You could save your own life : More about the disease, What is Takayasu Arteritis? Takayasu Arteritis (TA) is a form of Large Vessel Vasculitis (LVV) with onset typically under the age of 50 years.  Inflammation occurs in the large ateriers, particularly the aorta (the main artery taking blood from the heart to the rest of the body) and its main branches such as the sunbclavian arteries which supply blood to the arms.  It can affect the renal arteries to the kidneys, the coronary arteries in the heart and the carotid arteries which take blood to the brain, In most cases (90%) the inflammation leads to narrowing of the vessels making it harder for blood to travel through them, hence TA is also known as “Pulseless disease” and often the absence of a pulse at the wrist leads to diagnosis of the disease.  In around 25% of patients part of an artery may also get bigger, forming an aneurysm. As of now this disease is incurable. Ellies dad Robert, Ellie's brother Oliver and good friends Tony and Trevor are walking 54 miles from Middlesbrough too Scarborough for this Charity on the 3rd and 4th  of April Any donations however small will be massively appreciated too help raise funds for research and treatment of  tak, and other rare vascular diseases