Hey everyone! Thank you for stopping by and taking time to read this!

I actually think I might be insane, I’ve just signed myself up for a 5K run to raise awareness and fundraise for Stickler Syndrome UK.

As many of you probably know I have a rare medical condition called sticklers syndrome, because of this I’ve had my battles with running and well exercise in general really. I used to love running and it was my escape for quite a while but the aftermath is no longer worth it however having said that I’ve now had a career change and hobby changes too. Which has meant that I am now a lot more physically active than I have ever been and although most days I question why becuase of pain etc, I am doing things I genuinely love and to me that’s what matters most! I know that at some point I’m going to have to reevaluate those things but for now I want to concentrate on the happiness that’s in my life.

Anyway after my rambling, for those who don’t know what sticklers is here is the simplest explanation I could find:

Stickler Syndrome is a genetic condition affecting connective tissue (essentially collagen), with variable symptoms. There are now known to be at least 11 distinct sub-groups of Stickler Syndrome, but the effect in each are typically in four main areas:

Eyes: Short sightedness, cataract and, in the majority of cases, a high risk of retinal detachment. It is the most common cause of retinal detachment in children, and the most common cause of retinal detachment running in families.

Hearing: ‘Glue Ear’ and hearing loss which may be either conductive, sensorineural, or commonly a combination of both.

Musculoskeletal: Hypermobility and progressive arthritis (any joint may be affected but most commonly hips, knees and lower back).

Oro-facial: Cleft or high-arch palate. Affected new-born babies may have small nose and under-developed (recessed) chin, although they usually mature as the child grows.

For me personally I am visually and hearing impaired and I also have the joys of arthritis in more places than a “normal” 23 year old would probably like to admit. But, this is my life and I have been lucky enough to have a support network that were aware of sticklers and were able to get me the initial support that I needed from birth.

There are so many people out there don’t know what stickler syndrome is and I want to help that change!

I am determined to prove to myself and to the few people that have laughed at me when I told them about the run, that I can do this. I know the day after the run is not going to be fun but it will probably be something I don’t do again, so I want to do it while I feel most able to 💕