We raised the moneyfor my wheelchair !! but heres the reat of ky story

for My name is Beth, I am 21 years old and I live with many complex conditions. For the past 6 years of my life, I have been battling a severe unknow skin condition that has caused me to end up living my life in a bubble. I have airborne reactions to many spices, just breathing in the smell causes swelling of the throat, lips and breathing difficulties resulting in anaphylaxis. As well as the aromas of many foods coming in to contact with my skin causes severe grazes/open burns on my skin. In addition I have many other allergic reactions from chemicals, fragrances, the sun, foods and my own body (crying, laughing causes skin flares).

For years we have seeked a diagnoses from doctors, or even treatments to help manage symptoms but often told I have several complex medical issues and I then get referred to see a specialist (lost count of how many I have seen from so many different departments: rheumatologist, dermatologist, neurologist, nutritionist, immunologists etc). The latest specialist we have been informed is the best to know and help me is currently three years in waiting and yet to have an appointment date.

From the deterioration of my health, I have dealt with other symptoms and conditions from POTS, hypoglycaemia, recurring UTIs, constipation, sickness, seizures, scoliosis, disc deterioration, joint subluxions and several more.

I am now fed via an NJ tube due to the severity of my gastric issues and reactions to food.

Over the past couple of years, my mobility has decreased massively and I have suffered with my leg flares since the age of eight but they have now implemented my mobility permanently. I no longer have the same strength and mobility anymore and have been reliant on my wherlchair to get me around for the past 7 months. Despite physio and exercises i have been unable to regain full mobility. I have been using a manual wheelchair for a couple of years now but it does not give me the freedom to do anything myself. I am not strong enough to push myself and when i do it results in my joints displacing and a lot of fatigue. I have to rely on others to help get me out the house.

Unfortunetly I do not qualify for an nhs funded electric wheelchair due to my seizures and the fact that my home is not accessible. I have been fighting my local council to help me move into appropriate housing for many years but we had little support and due to the housing I would need wait lists are ridiculous. We now rely on carers to help with my every day needs and support and have even had paramedics and occupational therapists shocked about my living arrangements because my home is not accessible and I dont have the appropriate medical devices and equipment needed to help my every day symptoms and mobility, to help me be independent and live in less pain and discomfort.

I am forever grateful that I get to share my story and bring awareness through my social media. I am lucky that I have an amazing following of nearly 55,000 followers over TikTok and Instagram and it has opened up brilliant opportunities for me but an electric wheelchair and private healthcare seems to be the only option going forward to give my hope in my future.

I don’t want to just keep surviving I want to live.