🙏🏻PLEASE HELP US HELP🙏🏻

As many of you know, 2 of my girls and I suffer from a rare disease named Behcets Disease.

This disease causes inflammation throughout the body, particularly affecting blood vessels of all sizes, including arteries and veins. Symptoms can occur anywhere where there is a blood supply – from the brain down to the feet.

Most of the symptoms are very painful and sometimes the disease can affect major parts of the body, such as the eyes or brain, causing serious consequences including blindness or strokes.

Nobody knows exactly how rare Behcets Disease is but it is estimated that there may be about 0.64 in 100,000 people affected.

Research on rare diseases is scarce so patients are often left with little hope of either a successful diagnosis or treatment.

This year, Behcets UK, who are now UK's primary patient support organisation, celebrate their 40th - RUBY - anniversary. After completing surveys, this charity organisation found that Behcets was a lot more painful and debilitating than ever previously understood and it was taking patients, on average, 12 years to get diagnosed.

Their current areas of focus are education within the medical field and fundraising to promote research. Their work has been commendable so far, having helped develop 3 specialists centres in the UK (Behcets Centres of Excellence).

Speaking from a personal perspective, our disease often leads to health professionals googling the condition, or saying not sure whether we can do anything to help, we can only try.

I currently take 11 totally different, strong medications every day, as well as antibiotics, steroid cream and antibiotic cream as and when it is needed. My last 2 consultant letters received last week (Rheumatology & Gastroenterology) suggested I use 2 more other, serious medications. I haven't started these yet as I would prefer to try to manage a symptom without medication for as long as I possibly can.

Between me and the girls, we are under lots of different consultants solely for Behcets Disease including:

Rheumatologist

Neurologist

Gastroenterologist

Audiologist

Opthamologist

Orthoptics

Speech & Language Therapist

Urologist

Play therapist

And, we have had so many tests. Too many to even think about mentioning.

With Behcets, every day is painful and each new day decides just how painful it will be. I'm sad that my little girls have this and can't imagine their pain gradually getting worse throughout their life.

I can only try my best to support an organisation that has brung so much positive change within the last 40 years.

Please join me in having a 'pyjama week' starting from Monday 27th February - Friday 3rd March. If you can't personally join in, I would be so grateful if you could sponsor me. Any amount helps 🙏🏻

A pyjama day can keep the pains at bay!

PJ's can make a bad day better!

Joining me in my fundraiser so far:

Amy Scott

Danielle Cook

Heather Bladen

Ashleigh Creed

Nicole McQue

Jessica Taylor

Katie Godley