Edward has recently been diagnosed with Scleroderma a rare auto-immune disease, Scleroderma' is an umbrella term that refers to the various different types of this rare and complex condition. Ed has two conditions which can sometimes come hand in hand; Linear en coup de sabre, a condition that affects less than 3 out of 100,000 individuals and Parry Romberg Syndrome, which affects 1 out of 250,000 people.

Information on these diseases are minimal, currently there is no cure and no way to reverse the damage that has occurred to Edward’s forehead and the left side of his face.

Luckily Ed has been diagnosed very quickly, a lot of people have to wait around 3 years for a diagnosis. Hopefully the treatments that Ed is starting can help to slow down the progression of the disease.

Ed is 6 years old and is proud of his “horns” on his forehead, he feels they are part of him. He has been so brave on his journey so far but there is still a long road ahead.

It is so very difficult to explain to him what is happening when it’s been tricky to understand ourselves. Ed is navigating this as best as he can. He is very worried about his upcoming treatment and monthly blood tests. He is a boss at CT and MRI scans and would happily trade these for everything else he is having to go through!

Ed explains it as “the workmen in his body who fix poorly parts of us are forgetting to take a lunch break or have time off from their jobs, they are working so hard that they are making the healthy parts of his face disappear too”

We have found so much information from SRUK, who are the only charity who specifically supports Scleroderma and Raynards within the uk.

Ed has such a kind heart and wants to help spread awareness of his conditions, SRUK helps this by investing in research, improving awareness and understanding of the conditions and providing information and support to all those affected.

Please donate today!