In July, Emily, Josh, and Jamie are going to be participating in the Big Fun Run in Brighton, to raise money for EDS UK.

Last year, Emily and Jamie's sister Katie was diagnosed with Ehlers-Danlos Syndrome (EDS); a chronic illness which causes the Collagen ('glue') in the body to become faulty. The problems that this condition causes are wide-spread and vary in number and severity.

Katie is on the severe end of the EDS spectrum. Her illness includes a Mast Cell Disorder and PoTS, as well as joint, stomach, bowel, bladder, and eye problems. She has needed a tracheostomy, feeding tubes, catheters, Hickman lines, and PICC lines to help her deal with these symptoms.

Unfortunately, Katie's health has deteriorated over the last few years, to the point she's at today which, at her worst, could leave her house-bound or even bed-bound. She has spent more time in hospital than out of hospital, and is on around 40 tablets per day to try and control her symptoms.

She suffers with daily Mast Cell reactions which present similar to allergic reactions. These cause spontaneous severe tongue and throat swelling, which she has a tracheostomy in her throat for, so she does not suffocate during these episodes. The reactions also cause bowel swelling, which causes agonising stomach pain for Katie, and require strong opiate pain relief called Fentanyl in order for Katie to stay at home rather than live in hospital. She faints on an almost daily basis due to her PoTS, which is a condition which affects the heart and her heart rate upon standing. Her loose joints lead to frequent dislocations which require casts and splints, and her stomach issues mean she has to follow a strict diet.

Katie will have this condition for the rest of her life. It is still a very misunderstood illness and often people suffer for years and years without knowing what's wrong, with many healthcare professionals assuming it is a psychological disorder. This ignorance deprives people of appropriate treatment, and adequate medication to control their pain and other symptoms.

EDS UK as a charity has provided Katie with invaluable information and support since diagnosis. They aim to raise awareness of the condition and also support EDS sufferers. The more money that is raised for this charity means more can be invested into research, and hopefully before too long a cure.

--> Katie's blog is: www.katiefant.com