It came to my attention that I really haven’t given any information as to why I am blogging, and why I have chosen such a narrow subject about which to write the aforementioned blog
I’m Lina, a 24 year old Essential Thrombocytosis patient. Essential Thrombocytosis or ET is a Myeloproliferative Neoplasm (MPN). Basically it means that my bone marrow is extremely over-zealous about producing blood cells. Platelets in particular. I was diagnosed in 2005, and it has been a charming roller coaster ever since. Enough about me….now why I chose to whine in a public forum….
The short answer is…because I wanted to.. But the better answer would probably be that in the 6 years I have had this disease I haven’t really had much of an outlet to talk about it. My friends and family listen, which is nice, but sympathy really only goes so far. I attended a meeting in Chicago earlier this summer, and it was mentioned that other patients might enjoy hearing my perspective on things (as I would enjoy hearing theirs), so here it is. I hope that this will be helpful to others. If anyone has questions or would like to suggest a topic, feel free to leave it in the comments section.
2 thoughts on “Backtracking a little bit….”
Wow you are amazing dealing with ET at 24 yrs old, I was diagnosed with ET when I was 35 yrs old and now I have myleofibrosis, the roller coaster doesn’t get any easier at 50 yrs old either, however I believe with all my heart and soul one day they will find a cure that doesn’t have a ton of side affects and we can go on and enjoy our lives, I wish you all the best.
Hi Lina, JEanne again from South Africa. yes, I have now started from the beginning of all the posts and YES eventually I find someone in a similar age group that has ET (and Astrid who got diagnosed at my age), I was diagnosed with ET 6 months ago at the age of 34yrs!
The last 6 months of my life has been a living hell! In short I have a wonderful husband and 2 kids, ages 2 & 6. My selfconfidence (for some reason) has dissapeared, all I do is cry and I get very bad anxiety attacks and oh yes, I have picked up 13 kgs in 6 months (which is not helping). My legs hurt badly, they feeI heavy when I sit too long and if I stand to long I get terrible pins & needles. I am on Hydrea. Please let me know what you are experiencing, I truly would like to get some feedback from someone with the same condition. kind regards, Jeanne