Hi, so I am kind of new here... so here's a bit about me... I'm 23, and was diagnosed with ET a few years ago. My platelet level varied between 1100 and 1600 and recently the doctors found out that my Von Willebrand factor is low, so on top of being at risk of clots, I also bleed strangely.... so on discovery of this I have started taking interferon (I put this off for ages, I'm not a fan of medication....) I'm a couple of months in and its getting easier, but I still struggle.
I work a lot, train in martial arts a lot, and the one thing I find most frustrating is how tired I get. I probably do quite a lot, but I constantly feel like I fall short.
Does anyone have any tips/hints on how to prioritise/ deal with the emotional bit/ not get bogged down in feeling super selfish all the time?
Thanks in advance for any replies, from what I have read on here, this community seems to be very helpful and inclusive.
Rochyne
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Rochyne
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This is very interesting post indeed. I have jak2 ET + with Von willebrand factor. You are the only other Pearson I have heard of. I also have a allergie related complication ( I'll get you the clever name soon) this is another MPD and causes the slow processing of toxin in the body so I can get rashes or welps.
Funny thing is I studied martial art for years. You need to reconsider this choice with Von Willerbrand. Have you been referred to the haemophilia centre ( if not go ) my understanding is you need treatment to reduce playlets under 400 then it is possible your Von. Willerbrand will fall into normal range. ( my hemotologyst is sceptical so we will see who's correct once I am in range). Speak to sencia and request low contact training but I believe training is good it you can. I hate training to half so Stopped training( week and defeatist ) because I like training and allow no excuses of myself so I preferred to stop although I regret it daily.
You must do as you see fit, if you are able you might be able to take a more teaching role ( I am not qualified enough) . this would be ideal. You will work it out.
Hello! I should have mentioned, I don't have the jak2 mutation! And I'm currently on a list to see a clotting expert.
I already teach, and only half of my training is contact based.
I completely understand the half training thing. Not being able to fully engage with it is awful. It's very frustrating, I guess I just need to learn to be less hard on myself!
I haven't heard of anyone with the et /von Willebrand combo so hi!
Welcome to the group. You'll find a lot of good advice and support here. It's not always easy to deal with the condition and to come to terms with. It's certainly a help to know there are others in similar circumstances and to find out how others deal their condition.
I have to say the von willebrand is a new name to me. I'd be interested to know more about what it is. It sounds like you are very physically active and from the posts I've seen certainly trying to maintain a good level of activity can help to combat fatigue. It sounds like you may be feeling frustrated at the tiredness you feel, I would suggest try not to be too hard on yourself and give yourself a big pat on the back for persevering. You certainly sound like a determined individual. I don't think there's anything wrong in being a bit selfish from time to time.
I think (not researched it massively...) the von Willebrand thing is a protein that aids in clotting in your blood. The doctors seem to think my body may under produce it almost the combat the high levels of platelets, and the Increased risk of clots. ... but they are slightly stumped, Cue lots of specialists.... My hormones are also unusual, and I get Reynauds... but that's another story.
My issue with the selfishness is that it seems to have been all I have been since the start of December ( which is when I began taking the interferon) also it doesn't help that I haven't felt well, or anything like myself since I started it. I hate being slowed down. I hate to think it could beat me. It's just harder since starting the meds. But then I hate to think I give myself the permission to give myself an excuse. Before I would often brush off the fatigue as I didn't really regard ET as a real enough thing to effect my life that much.
Your understanding of Von Willerbrand matches my understanding. The only difference is I was told the overproduced playlets are not mature enough when released into the body, therefore are not suitable to carry the correct amount if Vin Willerbrand protein . Reducing platelet count might correct the problem some how although the jury is still out on that...
As health goes remember a lot of seasonal virus's are around just now and we are more susceptible to them with our condition, stay warm, rested and away from sniverers😄😄.
That's the same train of thought of my doctors. But at the moment, the cons of interferon still outweigh the pros.... at some point I'll get to go and see the clotting specialist and get their opinion. ...
The tricky thing with that, I work in a warehouse , which is pretty chilly. Then the front of house (where I spend about 40% of my work time ) is a cafe and lay centre. Full of kids and all of their germs!
It just seems like I've been ill since the start of December and it's really starting to get boring!
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