"I have lived with blood cancer (MDS) for 19 years, officially, being diagnosed in 2000, but I had test to query it a couple of years before that. This was highly unusual at the time because people that was diagnosed with my type of cancer (MDS) were actually older than me, in their 60s / 70s / 80s. But I was a young woman, in my thirties. So it wasn't what they were looking for."
Watch below the video of our dear Committee Member Reverend Kes Grant
"After surviving sepsis ten times, and septic shock once, my fantastic team at Kings decided that I needed to have a stem cell transplant.
There were no matches for me, in the world, because I am so unique, we are all unique, in one way or another. But my little sis Gale became my donor and I was able to have a stem cell transplant in October 2016."
You Can Become a Donor!
Tips for MDS Patients
"I am posting this in honour of all the people that I've shared this journey with. Some of them are no longer with us. Some amazing people I met along the way: Sophie Wintrich and all the people that work with me at MDS UK Patient Support Group and other support groups. You do a fantastic job. We wouldn't be nearly as well informed without your love and care and support. You are so professional, and you are such a fount of knowledge and we love you for it."
"There are other cancer charities out there that do an amazing job as well, like Delete Blood Cancer, Anthony Nolan, Leukemia Care. The thing is that it is so important, really, that people get the support that they need, so that they can continue to live."
"It's really important that we find things that give us life, and don't just concentrate totally on the blood cancer, even if that obviously is a huge part of who we are and impacts greatly on our life. But it's not all of who we are. All of us like to do other things at times."
"This is my philosophy for dealing with blood cancer: whatever the weather, bring your own sunshine."
More tips from Kes in our Newsletter: "Coping with long stays in hospital"
Please do send us your story – whether you are a patient, family member or friend:
Email it to firstname.lastname@example.org, or call to our main office Tel: 020 7733 7558.
You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!
You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.