I am Silvana, and I live in Rotterdam, The Netherlands. I’m 52 years old and was diagnosed with E.T December 19th 2011, about 3 weeks after I had a bone marrow biopsy. I have 2 children, a daughter and son. My other experience with a chronic condition was with asthma, which I was diagnosed with 1993/1994.
In 2003 I was hospitalized at the ICU for 3 weeks with Acute respiratory distress syndrome (ARDS) which included 2 weeks in a drug injured coma. After this I asked my complete medical file where I read that my doctors thought at that time i had MDS. However, I didn’t receive my diagnosis of ET until 2011. That’s why I believe I have been living with this long before I was diagnosed.
In December 2013 I was also diagnosed with papillairy thyroid cancer, stage 3. I had 2 surgerys to remove the whole thyroid and I had also twice the highest dose radio active iodine treatment. In May I heard the good news that I am thyroid cancer free! My next check up is November. About 2 months ago I had a minor stroke which caused my doctors to modify my regimine from aspirin to clopidogrel. In the past 6 weeks I have also been on Hydrea.
I am a fighter and don’t give up easily! On November 13th I am going to London (UK) to attend the ‘Living with MPN’ day!
It’s been a long time since being on a plan, and I am excited and a bit insecure to go all alone. I look forward to meeting others out there with MPN. I am also going for the 4th year in a row to the Dutch MPN day which is October 31st!
Contributed by Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.