PV diagnosed age 17

• Diagnosed at age 12
• PV treatment quest
• Surviving a transplant
• Keeping the faith with ET
• Two decades with PV
• Cyclist grapples with PV
• Stroke hit at age 36
• First symptom foot pain
• Survivorship after BMT
• Diagnosed while pregnant
• PV diagnosed age 17
• PV leads to stroke
• Inhibitors slow MF
• Medication pros, cons

DVT after surgery

My name is Jo. At the age of seventeen I had a straight-forward knee arthroscopy, and I developed a DVT in my calf 24 hours after the operation. After a series of blood tests I was diagnosed as having ET. Prior to diagnosis and the operation I had no symptoms that would suggest a problem. I had always been very athletic and healthy, so it came as a big shock to find out that I had an incurable blood disorder. At diagnosis I had a platelet count in excess of one million. I remember feeling really scared, but what affected me most was being told that this disorder was more commonly associated to “old people” and that left me feeling totally isolated, and the Why Me? syndrome soon kicked in.

Hydroxcarbamide treatment last 20 years

My initial treatment was one dose of bulsulphan which reduced my platelets to half a million and the treatment lasted for approximately one year, after which I was started taking hydroxyurea, and I have been on that drug for the past twenty years. My platelet count is stable at approx 380,000 and I have had no problems with taking hydroxyurea.

Successful life

I was married twelve years ago and I went on to have two successful pregnancies and two healthy children, thanks to the care that I received from my consultants. One of my doctors was particularly brilliant, and her knowledge and encouragement helped me and my family through some very difficult and complicated times.

I am now 38 years old and although the last 21 years have not always been plain sailing, I would now describe myself as fit and healthy. I attend clinic at my hospital every three months, just to make sure that everything is okay.

Value of MPD Voice

I think that the MPD Voice support group is vital because I feel that there is a lot of information on the internet that is inaccurate, and in some cases dangerous advice is also being given. By having a support group that is backed up by MPD Voice and NHS medical advisors, people with ET and other MPDs are provided sound and accurate information and, more importantly, people are givenhope that one day there may be a cure. It is also reassuring to know that ET is no longer labelled as a disease of “old people”.

It came as a big shock to find out that I had an incurable blood disorder.