For the TSL Birthday Ball, Sat 17th Jan, we are supporting a small but invaluable charity that helps patients with MDS (Myelodysplastic Syndrome ). This means there will be a fab RAFFLE where the proceeds all go to this charity..
Sophie Wintrich, a TSL student, is one of the team that make so much possible.
This is her info about their work:
Description of what MDS is:
Myelodysplastic Syndrome (MDS) is a rare type of blood cancer where the bone marrow can no longer produce the correct quantity and quality of blood cells.
Myelo = Bone Marrow; Dysplastic = strangely shaped or abnormally shaped
MDS are a group of malignant blood disorders – and are types of Bone Marrow Failures.
Cells that can be affected:
Red cells (also called erythrocytes) – which carry oxygen to organs and tissues in the body.
White cells – which collectively fight against infection.
Platelets (also called thrombocytes) – which prevent us from bruising and bleeding.
There are different levels of severity of MDS – ranging from Low-risk, Intermediate 1, Intermediate 2 to High-risk MDS. It can then progress to leukaemia in a third of cases.
Most people, newly diagnosed with MDS, have not heard of this disorder before and the diagnosis usually comes as a severe shock.
It mainly affects people from the age of 60, but we know of children and young adults with the disease.
In the UK, about 2500 new patients get diagnosed every year with MDS. This will increase severely in years to come as our population ages.
There is no known cure for MDS, other than a stem cell transplant, but most patients are too old to survive a transplant. So many patients end up being transfusion dependent with their quality of life severely affected.
It is a progressive disease – so patients need to learn to live with the possibility their life may suddenly worsen dramatically at some point. Some treatments can alleviate symptoms and prolong survival for a while, but many of our members die prematurely.
What out charity does to help patients and their families:
This disease is rare and complex to understand. The diagnosis is usually a severe shock for patients and their families. We are here to offer information and support via phone, email, chat forum and facebook, available away from the consultation rooms – where there is never enough time to ask the right questions.
We help patients to feel less isolated, by connecting them to other patients. We organise group meetings for information and fave to face contact. This is particularly important with a rare disorder.
Lastly, we campaign for access to treatments, as often the drugs for such diseases are deemed too expensive for the NHS, and are therefore rejected, denying some patients some extra months or even years of life.
To make a drug available, we have applied pressure on pharma manufacturers to reduce their costs and worked with organisations such as NICE to highlight drug benefits, from a patient perspective.
We don’t receive any funding from the government, but they point to us for assistance on their official websites.
We are a small team of 2 full time employees, and a part time volunteer.
We have 10 board members who help out in various capacities, mostly patients themselves.
We have been going since 2008.
It is hard work – as there is always more to do – but it is also very rewarding.
Thank you all for reading through all of this and learning about this little known but very severe condition.
Mostly thank you for your support by attending this second charity milonga at TSL.
And massive thanks to Claire for inviting us.
For extra help – you can decide to become a stem cell donor – if you are aged under 55.
It is no more painful than a blood donation – and can save a life. Check out website for more info: