Earlier today I promised to put up this Post, as it may have some bearing as to why some of us have more BP & hypertension, and also clotting events, than do others... (?)
Could it be as simple as what 'Blood Type' we are???
The only reason I know mine is due to having babies - I needed to have an Anti-D injection after delivery/miscarriage. My Mum has the same blood group as me as does one of my sisters. The other sister and my brother are A+.
No, not as yet... But it is also interesting because I have recently learned I am VWS Type 2 as well... Which is lower levels than most, which might indicate I am on the O side of blood types...???
Very interesting. Another interesting factoid - people with type "O" blood also tend to have significantly lower levels of von Willebrand Factors. Came up when I was undergoing the full von Willebrand Disease evaluation. (I am O+)
Will be interested to hear. Despite vWB factors dropping below norm, I did not test positive for vWBS. Do keep an eye on it though as factors seem tp dip when platelet levels rise.
I have been doing a Methotrexate (MTX) Trial to try to better manage my rising platelets over these past months...
...However, I believe that I have started to detect a possible ulcer around the outer heal of my left ankle. Both ankles have been burning for some time, and now the skin has become notably irritated on my lefthand side...
Hence, I have just ceased taking the MTX to try to determine if my ankles return to their normal disposition etc... (?)
However, the consequences of such actions will of course possibly mean Platelets back on the rise again, and VWS antigen levels bottoming out as well (?)
I am presently looking into the benefits & liabilities of Navitoclax for Platelet management... (?)
Speak more soon when I learn of my own Blood Type etc...
Well dagnabbit! Sorry to hear those woes. I do get that given the vWB issue platelet control is needed. Hopefully some of the emerging treatments will prove helpful. I know you stay on top of the research. Perhaps one will work for you.
Will still try to get Down Under at some point. Want to come visit my nephew in Sydney, see the Outback, and pop over to New Zealand - just because.
Going to have to deal with the bone tumor just found on my jaw, but heck - after a brain tumor a mandible bone tumor seems like relatively small potatoes. Still trying to sort out the impact of having a Rasopathy (neurofibromatosis type 1) along with the JAK2 mutation. Two kinase-based disorders in different kinase systems that talk to each other - aren't I lucky!? Neoplasms abound apparently.
Will be very cool to see you in Sydney. Please do provide me with some warning and I shall make sure we arrange a Cafe Catchup during your stay. I am sure others would be delighted to meet with you too...
Von Willebrand disease (VWD) is a genetic disorder caused by missing or defective von Willebrand factor (VWF), a clotting protein. VWF binds factor VIII, a key clotting protein, and platelets in blood vessel walls, which help form a platelet plug during the clotting process. The condition is named after Finnish physician Erik von Willebrand, who first described it in the 1920s.
Good thing that surgery went well. Turned out to be a lipoma with osseous metaplasia. Not a big surprise as this is the 7th lipoma I have had removed, just the first that was converting into bone tissue. It is gone now. Yay!
Interesting research. I am B Rh+ and have had PV JAK+ for nearly 5 years. I had two leg DVTs last year, treated for 6 weeks with rivaroxaban. Clear now. I wonder if I will get a recurrence if the DVT risk is higher - but I am not going on sweat on it.
Gracious I am an A+ too. Just something more to worry about😩Jak2 ET since 2019 and now progressed to PV It all causes lots of anxiety but just have to keep going and reading all the stories of others here
Interesting. Also blood type A+, but low VWF - thus bleeding risk rather than clotting, normal BP. Early (prefibrotic) grade 1 MF, Jak 2+, proliferative stage.
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