Thanks for the information – much appreciated. It’s incredible really that 14% of patients in the US have already been living with the disease for 20+ years, especially with the new drugs coming into play. Although I feel like the UK are much further behind with approving these drugs for use, am I wrong here?
I recently joined the UK support group but unfortunately had to leave pretty sharpish because I didn’t feel it benefitted me very much and found quite a few upsetting posts.
I’m trying to avoid Dr Google because as you say, it’s based on averages with peak diagnosis at c. 70 years old. Mum is very spritely for her age and was fit & healthy prior to fractured vertebrae/ribs and general diagnosis, she honestly doesn’t look a day over 50!
Just naturally very concerned about her and her welfare and must admit wake up most days and the first and last thing going through my head is ‘Myeloma’.
Just realised I went off on a tangent here, sorry about that!
Please do not feel that you are alone in all of this!
We are the Myeloma UK Events team and we are hosting our first virtual networking Digital Infoday Session especially for younger patients and carers. I have put a link to our post below, but you will also find it in the “Under 50’s” section of the forum:
Hi Miley, it is a perfectly normal, natural reaction to a diagnosis like myeloma to be shocked to the core by it, and to become totally preoccupied. One day you will realise that you forgot about it for a few minutes, then these times will become longer and more frequent. Eventually “myeloma” will loose the fear factor and just be incorporated into your mum’s life, and yours. Myeloma is more like a steeplechase than a sprint, and we don’t stay paralysed with grief and fear, you and she will find you cope with it. Some people with myeloma even feel that the diagnosis has helped them appreciate the important things in life and to enjoy the moment. That is certainly true for me whilst in “remission”.