The Basil Skyers Myeloma Foundation was set up in 2010 to provide services and practical support for patients with multiple myeloma, their families and carers. The Foundation has no paid staff and and is run entirely through the goodwill and voluntary efforts of those who support us. All of the donations that are made to us go directly on support for patients. The work of the Foundation is overseen by a Board of Trustees comprising patients, carers, consultant haematologists, clinical nurse specialists, researchers and public policy specialists.
Multiple myeloma is a cancer of the blood plasma and starts in white cells in the bone marrow. These cells normally produce antibodies which help to fight infection but in this case, the plasma cells start to proliferate and produce rogue proteins which have no use or function. The proliferation of the cancerous cells in the plasma displaces healthy red and white cells from the bone marrow and this leads to anaemia and fatigue, frequent infections, and unexplained bruising and bleeding. These symptoms are also often accompanied by bone pain particularly in the lower back and the ribs, but in any part of the long bones which produce blood cells can be affected.
Multiple myeloma affects all communities and the Foundation is therefore concerned with identifying and responding in practical ways to the different patient experiences. Multiple myeloma is the second most common yet little known blood cancer of which there are 4,800 new cases diagnosed in the UK each year. The first family, friends or colleagues hear the words multiple myeloma is often, at the point of diagnosis. Multiple attacks the blood plasma cells. Due to red blood cells in the blood plasma being crowded out by cancerous myeloma cells, extreme fatigue, breathlessness and confusion are common features of the disease.
The average age at which patients are diagnosed with myeloma is 70+ but that picture has begun to change dramatically and in recent years and more people in their 30s, 40s, and 50s are being diagnosed. Multiple myeloma affects all communities. Clinical evidence does show however that: myeloma tends to affect more men than women; black Caribbean and black African people are more likely to be diagnosed with myeloma and at a much younger age than the population generally, and that men, and black people, have a higher mortality rate. The Foundation is therefore concerned with extending the discussion around myeloma and has set up a partnership research programme which is unprecedented in the UK, exploring the reasons for these differences, as understanding more about multiple myeloma and diverse patient experiences of the disease has the potential to benefit all patients.
There are a number of effective treatments for multiple myeloma. They include a range of chemotherapies and stem cell transplants, which can halt the progress of the disease for 10 years or more in some patients. There is however no cure at the present time but the future is bright as new treatments are continually being developed.
We support patients and engage communities to inform and shape services and clinical practice. The activities of the Foundation include but are by no means limited to the following:
Grants Programme: We run a grants programme providing individual patients with up to £250 to meet the costs of
• Household Bills
• Cushioned Wheelchairs
• Travel Insurance
Clinical Research: We lead research in areas that have not been explored or are under-researched to try to understand more about myeloma in different population groups. This has potential benefit for all myeloma patients.
We have provided funding for practical support in a number of ways since we were set up. We have given over £25,000 directly in patient support.
Contact Dr. Sophia Skyersinfo@basilskyersfoundation.org