A paracyclist diagnosed with a rare form of cancer is helping fund research to find a cure for the disease.
Liz Clarke-Saul, 30, has primary bone cancer adamantinoma. The cancer accounts for less than one per cent of bone cancers and fewer than five people are diagnosed in the UK each year.
The Walthamstow-based sportswoman learned she had adamantinoma in her ankle aged 12 and at 14 had her left leg amputated below the knee to prevent it spreading.
She went on to university and to train as a paracyclist, and won a bronze medal competing for Great Britain at the Paracycling Road World Cup in South Africa in 2015.
After 10 years in remission she believed she had left the cancer behind but last June discovered it had returned in her ribs and was incurable.
The athlete does not know how long she will live but wants to start searching for a treatment to help others. She is hoping to raise £20,000 for the UK’s first dedicated research project into adamantinoma with the Bone Cancer Research Trust.
Current treatment of adamantinoma is restricted to surgery for removal of the cancerous area. Chemotherapy and radiotherapy are palliative but do not treat the specific cancer cells. Ms Clarke-Saul has had occasional radiotherapy since the cancer recurred.
She told the Standard: “Being so fit and healthy actually stands me in good stead. I want to carry on living every day as fully as possible and carry on doing all the things I love. A bit of normality and routine is really helpful.
“The fundraiser is something I wanted to start now. We are the only ones fundraising for adamantinoma at the moment, in the UK or possibly Europe. It’s about taking control of something. I had no control over my cancer, over it coming back. I was the fittest I had ever been when it recurred so it helps to take ownership of what’s happening.
“For me and my family it’s one thing we can do that is positive and will help people in the future.”
The athlete planned to marry now-husband Jack, 29, in September last year. The pair got married twice — once in an intimate ceremony just two-and-a-half weeks after the diagnosis and again in the autumn.
Dr Zoe Davison, head of research and information for the charity, said: “Due to its rarity, adamantinoma has not been prioritised by other organisations as a disease needing focus.
“Through Liz’s fund we will finally be able to give this rare but devastating disease the attention it deserves.”
- To donate, see https://www.bcrt.org.uk/get-involved/tribute-funds/the-liz-clarke-saul-fund