Grant support is not available yet. We are away working very hard to raise the funds needed for this service. As soon as sufficient funds are in place we will be accepting grant applications. Thanks for your patience.
Desmoid Aid UK is a non-profit charity providing information for people and their families when they have been diagnosed with Desmoid-type fibromatosis. The charity provides links to information and resources about the disease. We also provide a small grant to help pay for unexpected costs for newly diagnosed people undergoing treatment. You can help fund our work by donating now.
Being diagnosed with a Desmoid Fibromatosis tumour is quite a shock. There isn’t a lot of help out there. Knowing there is a charity to help makes a such a difference. You don’t feel so alone.
- A Desmoid Fibromatosis person
Desmoid-type fibromatosis (DF) is a rare type of soft tissue tumour sometimes it is called aggressive fibromatosis or a desmoid tumour. In every million people about 5-6 are diagnosed every year with DF. The tumours are formed from cells in the body known as fibroblasts and these cells are found in the connective tissue of our body, the tissue that supports, protects and gives structure to other tissue and organs.
Symptoms vary depending on where the tumour is. For most people they will notice a hard lump, that feels fixed to the tissue beneath it. Depending where the tumour is symptoms may include pain, swelling and impact on sleep and quality of life.
Signs & Symptoms
A biopsy, using a special needle that takes core samples from the middle of the lump is taken under a local anaesthetic. The biopsy is looked at by a pathologist under a microscope, it is the biopsy result that gives the diagnosis of DF.
Diagnosis
"Desmoid tumours are distinctly rare tumours, with an incidence of 5-6 cases per 1 million of the population per annum"
- The 2020 WHO classification of Soft Tissue Tumours