About our Founder, Hayley Mason
I was born with a rare genetic syndrome called Trichorhinophalangeal Syndrome (TRPS), meaning I have always had to deal with an invisible illness, as well as pain, disability and lack of understanding.
Although on closer inspection, you can see signs of my disability, on first glance, I look ‘normal’, and this can be the most frustrating aspect of invisible illness.
I was born and raised in London, then moved to Cambridgeshire in 2010 to be with my partner Steve, and has been in the area every since.
I trained as an Occupational Therapist in London to help people with illness and disability and to promote independence. I then began working as a Community Occupational Therapist in Ely in 2011, but had an ongoing serious of bad health, including a severe ankle fracture which impacted on my mobility for 4 months, ongoing battles with severe Anxiety and Depression since my teenage years which got very serious again, and later diagnosed with Fibromyalgia.
I have also been diagnosed with Hypermobility Syndrome, Osteopenia in my spine, Irritable Bowel Syndrome and have to deal with Obesity.
This is a lot for anyone to take on board, and I am only 31! However I am a positive, optimistic person, and I would not be who I am now, if it wasn’t for my health issues, and I would not be setting up CIIS, and have met the lovely people I have, so I do see it all as a blessing.
I was medically dismissed from the NHS in 2016; however I wanted to continue to use my skills and experience to help others like me with invisible illnesses and disabilities, to manage symptoms and the impact of these conditions.
I originally set up Ely Cambridgeshire Fibromyalgia Support Group, but realised quickly there was lots of people with other invisible illnesses who were struggling and seeking support, and that’s when Cambridgeshire Invisible Illness Support was developed.
I have moved from Professional to Patient, which at times has been difficult, but I think it helps me to have a good understanding and ability to develop CIIS to best meet the needs of all those involved.
I am extremely passionate about helping and support people, and making sure that just because our conditions aren’t visible, doesn’t mean we are.