Hi @Simonbond611,
I am 40 year old healthy woman with no symptoms besides my white and red cells have been in the low trends since 2022. I am getting a bit tired more easily nowadays too. My dad and his siblings passed away from this disease, which was caused by a gene called Short Telomere Syndrome gene. I am looking for a good hematologist to have an evaluation.
I saw that this post was from 2022. I hope that you are doing well since then.
Take care,
Ana
Hi Ana, good to hear from you.
The good news for me is that after the initial trauma of thinking my life was going to go into sharp decline, the reality is that my blood counts have bobbled along at levels below where they should be but without having any major effect on my ability to live my life.
I do sometimes wonder whether it’s the reason for feeling more tired than seems normal, or why I have areas of bad skin and reynaulds / dead fingers occasionally, but those could easily be fairly normal.
Good monitoring service from the NHS and have tests every 1/2/3 months depending on how the numbers (platelets mainly) are trending.
So the positive is that it has made me enjoy life more, book more holidays and worry less because who knows when things might get worse, if at all.
The stats and any google search suggests the longer term outlook isn’t great, but at the moment there is nothing to suggest things will take a turn for the worse anytime soon.
I’m sorry to hear that you’ve got experience in your family, certainly adds another dimension to it and means it’s harder to take comfort from having no symptoms. I hope you get some good evaluation appointments in soon and can get comfortable with regular monitoring and continue to have no side effects.
Would be good to hear how you get on.
Simon
Hi Simon,
So glad that you’re doing well. Continue to stay that way!
I will update everyone on how my appointment goes.
Take care,
Ana
Great to hear from you again @Simonbond611 and although I have another blood cancer I agree with what you say.
As for Google search it gave me a 5-10 year life expectancy, and that was 21 yrs ago.
Please do keep updating us and take lots of special care of yourself.