Around this time last year I posted this journal pageabout awareness. I mentioned my dear friend J who has an incurable blood cancer called essential thrombocythaemia (ET). Since then, J and a few others have set up an awareness and support group called the MPNAA (Myeloproliferative Neoplasms Alliance Australia) under the umbrella of the Leukaemia Foundation. To help them get started with both awareness of this group of diseases and funds for research, my 17 year old daughter and I (I’m 47 just for the record) are shaving our heads on 22nd July.
If you’d like to sponsor us in this, you can donate on a secure link here: www.leukaemia.org.au/mpn Before and after photos will be posted here next Friday.
MPNs are diseases that cause the over-production of certain types of blood cells. In ET the bone marrow produces too many platelets and they aren’t properly formed. This causes the blood to be thick and sticky, increasing the risk of clots and strokes along with other side-effects such as headaches and fatigue. There is also a chance of progression of an MPN to leukaemia. For most people, the diagnosis comes in their 60s or later. For J it came in her 30s. The medical community have no idea how taking the appropriate medications will affect someone if they take them for decades. And now there is someone in the group whose 2yr old has been diagnosed. Awareness and research are desperately needed so please share this info.
But why shave our heads?
Well, one of the possible side effects of the medications is hair loss. The thing is, because the treatment for MPNs is ongoing, unlike with other cancers where the chemo lasts for a certain length of time and then stops and the hair grows back, if hair loss happens, it doesn’t grow back.