Rare Today, Still Rare Tomorrow

The story of Jessica

I am Jessica, I am 30 years old residing with my husband Wayne and cat Trevor in Hertfordshire, but originally from The Wirral in Merseyside. In my spare time I thoroughly enjoy singing and travelling the world as much as I can. 

I have been recently diagnosed with a rare auto immune disease and rare motility disorder. Behcets Disease is a rare form of vasculitis that causes blood vessel inflammation throughout your body, leading to numerous signs and symptoms that can seem unrelated at first. They can include mouth sores, eye inflammation, skin rashes and lesions, and genital sores. 

Gastroparesis is a rare chronic motility disorder condition that affects the stomach. The name means stomach (gastro) paralysis (paresis). It is a long-lasting disorder where the stomach does not empty the contents in a normal way, without there being an obstruction or structural abnormality. The nerves that help the stomach muscles to move food out of the stomach do not work effectively, so the stomach empties too slowly. 

In August, I fell seriously poorly. I was sent by ambulance to my local hospital to the Gastro ward, where I spent two weeks battling these new and unexplained symptoms. After two weeks I transferred to the Royal Free Hospital in London, where she stayed for six weeks under the care of my consultant Behcetsspecialist. I was severely malnourished, Behcetsattacked my stomach. I was diagnosed with Gastroparesis, which translates to a paralysed stomach. I now have issues digesting food because of Gastroparesis and my immune system is suppressed leaving me vulnerable to Covid-19, therefore I am classed as Clinically Extremely Vulnerable, so I must shield at home for my safety.   

Whilst in hospital, I could not eat for six weeks. As part of a trial treatment, I informed that I could receive plasmapheresis, known as Plasma Exchange. After my first round of plasma exchange, I had an anaphylactic shock and I nearly died. Instead, they gave me a substitute plasma called Albumin, which I would receive every six weeks. I receive the plasma through a tunnelled dialysis catheter which is now permanently fixed into my chest. Due the recent increase in COVID-19 hospital admissions this has meant I that have not been able to go to hospital for treatment. In order to keep the catheter safe and infection free, District nurses now come to my home to flush the catheter and dress it once every week. Having a dialysis catheter has been extremely difficult because I cannot shower properly as I cannot get the tube wet. 

At some point in the future, my medical team have mentioned that I may have to have a feeding tube, but for now I eat a strict low fibre diet with the advice from a registered Dietician. Whilst I have been shielding, I am trying to keep busy by raising as much awareness as I can for other with rare conditions, invisible illnesses and disabilities. 

Rare Disease Day means that I can have the opportunity to raise even more awareness for rare diseases. Since September last year I have been raising awareness for rare health conditions, invisible illnesses and disabilities through my YouTube channel ‘Holiday with the Heathers’ sharing my own personal health journey. In January 2021, I started ‘HWTH Health Awareness Campaign’ website, using YouTube and social media as platforms. It is my hope to educate the public in hope for their understanding that a rare condition, invisible illnesses and disabilities cannot always by seen by looking at a person. By communicating, we hope that we can change the way people perceive these health conditions, therefore changing the way they think and act.

I am immensely proud of my husband Wayne for his continued love and support throughout this extremely difficult journey that we have experienced together. Now as registered my full time Carer, I can live a life to the best of my ability as I have Wayne by my side. 

Now we have started a successful health awareness campaign, I am lucky enough to be able to proudly support charities. The charities are supportive of the campaign. I am profoundly grateful that we can support one another.