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Living with a Rare Condition by Jessica Heather

I’m Jessica Heather, I’m 30 years old residing in Hertfordshire, but originally from The Wirral in Merseyside.

I became unwell in 2014 during my honeymoon to Turkey. My husband and I both were unlucky after falling ill to food poisoning.

After my husband recovered. I never got better and I suffered years of chronic pain, whilst being diagnosed with many conditions I never actually had.


My many years of suffering caused years of pain and uncertainty. I was told I had fibromyalgia, which affects your pain signals and I already had endometriosis from when I was a teenager.

After my honeymoon I ended up in hospital with not being able to eat properly, being put on food replacements for a month which seemed to work, and then the rheumatologist started to question a very rare autoimmune condition called Behcet's Syndrome.

The symptoms that kept popping up were ulcerations, skin lesions, fatigue, chronic pain and stomach problems. After this, my symptoms were treated without a proper diagnosis, I tried a lot of medications that never worked.

In June 2020, any food that I ate was not digesting properly to the point where I would vomit, suffer bloating and hot flushes. It felt like the food was stuck in my oesophagus.

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 Behcet’s specialist.

I was severely malnourished, the Behcet’s attacked my stomach and 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 have to shield at home for my safety.

Whilst in hospital, I could not eat for six weeks. As part of a trial treatment, I was told that I could receive plasmapheriesis also 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 hospital admissions this has meant I that haven’t 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 can't 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 via my health awareness campaign ‘HWTH Health Awareness Campaign’, which you can explore by visiting www.hwthhealthawarenesscampaign.com.

Having a rare condition that not even some of the medical professionals are aware can be extremely lonely. I thought how awful would it be if there is someone like me suffering with these symptoms or they've recently been diagnosed, not having that support. Even reaching just one person helps raise awareness and if I can do anything to help I will make it my mission to do so.

It can be really hard for patients, as it can take up to 10 years to get a diagnosis, so raising awareness is so important to help people not to feel alone. I am not going to lie I had a massive cry when I found out that Behcet’s and Gastroparesis was lifelong, but rather than being negative, I have tried to approach the situation as positively as I can. I am truly grateful to all that have supported me through this health journey, especially my husband Wayne, The NHS staff at the hospitals, the District Nurses and the other Behcet patients I have met along the way, some of whom I lucky enough to call close friends.


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