My name is Emma and I was diagnosed with ET in October 2012 I was 23 when diagnosed and they only found out through a blood test that I have this rare disorder.
I am now 26 and still the youngest at my clinic and the youngest my heamotoligist has met.
Can anyone out there let me know how they cope with living with ET on there down days or who they talk to as I don't know anyone who has this and it's really upsetting not being able to talk to someone with the same problem.
Thank you
Emma
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emmalouise16
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Hi Emma, I'm sorry to hear what's happened, it must have been a shock for you to hear the news about having ET. I don't have ET, but I was 36 when they diagnosed me with Polycythaemia.My treatment was hydroxyurea, and I took it for a long time. I now have Myelofibrosis. But the good news is that I am now 60 years old. I worked up until 2012 when the Myelofibrosis reached its end. Chemo drug no longer worked, and I was transfusion dependent. After two life threatening episodes and the loss of an organ, the wonders of medicine and science introduced the drug ruxolitinib just at the right time! And after losing 20 kilos I have since regained the weight. I just would like to say that there are many positive things happening in our world right now, and these advances will continue. Finally, to answer your question (!) Rest, Rest and more rest. Read uplifting stories / books about people who have survived cancer against the odds. I am but one, living example. Our state of mind is paramount in maintaining well being. It can be tough, but we can retrain our minds away from fear and negativity by disciplining our mind to be positive. I read other people's stories, but you might have a different technique. Yoga, sport (when you can) or talking things through with groups like this. I wish you all the very best. Sorry I don't have the same blood condition, but I have suffered from blood clots many times and finally modern medicine came up with an answer for that too! My story is but one of many success stories. Do I still have cancer? Yes. But I have so much more than that. Support is essential. Take care x
Joining this forum is a good start in being able to talk to people. I dare bet there will be people near you so you might be able to connect that way.
There are also forums held where people get together, so they can also be a good place to meet people.
We are lucky in the east midlands as a support group (the first one i think) has been running since January and gives us chance to get together and chat about how we are doing etc.
You can also sign up for a buddy to chat to, you can do via the MPN website or Maz on here will be able to help you with that too.
Hello Emma, welcome to our forum. I can completely understand how you are feeling, as will everyone on this forum, who are all very supportive. I have ET myself so know what you are going through, it can be a very difficult time when you are first diagnosed and it does take a long time to come to terms with it all, the impact on our daily lives is immense and there are days when it is hard to cope but also many days, thankfully, when you are feeling well and can cope so much better.
It might help you to have a buddy to talk to, a buddy is someone who has the same MPN as you and takes the medication so they can really help and support you, we do have some buddies registered with us who are about the same age as you and were diagnosed when they were very young, so if you think this might help then please email me at maz.cd@mpnvoice.org.uk and I can send you the details to request a buddy.
I would also urge you to come to one of our patient forums, I don't know where you are located but we have one in Edinburgh on Wed 30 Sep and then Liverpool on Fri 2 Oct, details are on our website mpdvoice.org.uk/get-involve..., we are also in the process of arranging one in Nottingham, probably late Nov.
We are also holding our 3rd Living with MPNs Day in London on Sat 14 Nov, this is an all day forum where we will hear talks from leading MPN experts from around the world, and also patient stories from inspiring patients, this day, as with our regional forums, gives people the chance to meet other people with MPNs, so helping you to feel less alone, the details for the day are on our website mpdvoice.org.uk/get-involve....
We are all here to help and support you, so just ask any questions you have and we will do our best to answer them for you.
You won't be alone anymore ,now you have joined mpn voice ,lots of members to chat to .dont ever worry ,if you have questions ,someone on this site will give you advice ,,because ,we have all been there ,some have the tee shirt ..Maz is a truely amazing organiser ,she also has the ear of the professional experts ,so I know she will help you ..coming to terms with this problem is the biggest hurdle ,I think ..but life goes on and you really can live to the full ..do get a buddy ,it's a great network ,we get to be distant friends ,,,all the beat to you. Twinkly ...xxx
Thank you all so very much for your kind messages.
I would like and buddy and will email maz for some more info.
It is very hard coming to terms with what I have and some days it can really get me down when others I try not to think about it as much and enjoy life.
When I got diagnosed my platelet count was 894 and they sent me straight to Heamatology, my consultant then put me on 75mg of aspirin and was having blood tests every 4 weeks.
Aspirin is a horrible drug I tried the table for and the soluble form for about a year and both gave me up tummy upsets now and then and really bad acid reflux.
Because I've this I'm not having to wait for a endoscopy (not looking forward to) to see how much damage it has caused as in still getting the problem, I had stopped aspirin about a year ago now and have been taking clopidogrel ever since.
The highest my count has been was 998 and they put me on interferon injections, I only had 2 and they knocked me for 6, I wouldn't ever take that again.
That was my only option at the time as he said I am too young for anything else.
Gladly my count went down a bit and varys now between 600-900.
I would love to meet new people who have what I have but I live so far away from all these forums.
I live in Plymouth but if you can reccomend one to me I am willing to travel.
I am also going to hold a coffee morning in September for mpn as I really do think you guys are brilliant.
I have PV and have had for 9 years now. I am 61 and live in Exeter. I know we are a way away from most, but there are a few of us around in the Westcountry. I attended the London November whole day event a couple of years ago and made a weekend if it. Booked a hotel very near the venue for 2 nights and done a bit of Christmas shopping at the same time. There is usually an evening one in Cardiff each year although I've not attended that one as the dates have never been right for me. It's well worth paying the train fare and hotel to attend as they are very informative especially the London Forum.
I hope you soon come to terms with your diagnosis. It must be very hard at such a young age. I know how I felt when I was diagnosed, I thought my life was ending, but this is not the case. I honestly try not to let it affect my life too much although the I have had to make adjustments.
Good for you Emma, holding a coffee morn is a brill thing to do for MPN. . . I wish I lived nearer as I would have loved to attend. I'm glad you're considering a buddy as suggested because it could make a huge difference to your outlook and the way you cope with your ET. And please use the forum because even though it's not face to face you will usually get a supportive / helpful response quite quickly. . as you have today I guess. All the best to you JR
Oo-er very spooky , , , telepathy even. Extra Sensory Perception maybe, , there are forces at work we have yet to fathom. . Anyway my friend I do hope you are well. Trying out a new tablet I bought for my incarceration so its all a tad new as I had only my network previously. . . . .JR
I can't thank you guys enough for all your support I am so glad I put this post as it's just so reassuring there are people out there that have what I have. Thank you guys i really appreciate it.
Hi Emma I was 27 when I was diagnosed with ET and it does seem over whelming at the time. There did not appear to be much of a support group at the time and getting involved with forums is a great support network. And as others have said although you may feel on your own at times you are not. Vicky xx
Hi Emma I have ET and it took me a long time to come to terms with it too. MPN voice helped me enormously. You will always have friends on this site to help you, they are the best form of medicine there is. Good luck to you.
I so understand where your coming from. I was 32 when I found out j had ET. I was the youngest at my clinic too. I felt very alone. As everyone seemed to be a lot older. And was very worried about the future. And what future I would have as I feel it was a older persons illness. Everything I read was telling me that. Well I am now 40. Doing very well. Better in fact than ever. I have been so lucky to have found fellow friends with ET who are the same sort of age as me and we were all in our 20's and 30's when we found out. I have friends with ET from around the world. We all keep each other going when we have bad days. It's not easy to find out you have ET. But over time and with wonderful friends it becomes much easier to live with. You should take up the offer of a buddy. As it really helps to have someone to talk to. Xxxx good luck with everything hunnie xxxxx
Hi Emma, i wish i could give you some advice . I dont have ET but my 8yr old daughter does, shes jak2 positive. She was diagnosed at 4 but we've since found out she had it at birth so she's living with it 8yrs now. I always wonder how she will deal with it in the future, she knows there is something wrong with her blood but she doesnt fully understand ET. She says she has 'busy blood' and if it gets too busy it could make her very sick and thats why she has to get all the blood tests.
I found it very hard to accept when she was diagnosed, i think it took me two yrs to fully come back to normal. Now 4yrs on i see she is definitely 'living' with ET, she is a typical 8yr old. So if thats one piece of advice i could give you, its to 'live' dont let ET define you. Also, live in hope, i cant believe the developments in the MPN world since my daughter has been diagnosed. I am confident that in her (and your) life time the medical world will have this disease under control. xxx Take care, and keep positive x
So lovely to hear from you again kentuckyrain. I met you at the London forum a couple of years ago and was only wondering yesterday when I was replying to Emma how you and your daughter were getting on. Your story touched everyone's hearts that day, particularly mine. We are all coping with this horrible thing, but, having children and grandchildren myself I know it must be so much worse for you to see your daughter going through it. A parents natural instinct is to take anything nasty away from our children and put it on ourselves, but you can't do that.
I hope your daughter continues to be a typical 8 year old and the medical advances come thick and fast.
Hi Emma. I am 40, but was 37 when I was diagnosed. I completely understand where you are coming from and how you are feeling. I ended up having counselling to help me talk through my feelings, I was angry that I had got it at such a young age and getting quite down about it.
3 years on and I am feeling better about it all, I can now talk about my ET without crying! My platelets are usually around 800, although at my last appt they had dropped to 600. I am currently on aspirin only and hope to stay like that for as long as possible.
I try to keep my like as stress free as possible, but that not always easy with a hormonal 10 year old DD and a teenage DS! I have 2 lovely dogs who I walk about 3 miles every day, it helps to have a reason to exercise as I don't do the gym! Some days it is a struggle to get out as I feel so tired but having the dogs forces me to walk.
This is a fantastic place to find support, you will always find someone who feels the same as you or is suffering in the same way as you.
I know exactly how you feel. I am 38 and was diagnosed a couple of years ago. Having read that this is more common in the over 60s I was really gutted, wondering how on earth am I going to cope with this for the next 40/50 years.
My platelets at one stage were 1598! I am now on 1g Hydroxy per day plus aspirin. Apart from tiredness and the odd bruise when I least expect it, I am fine and my platelets are down to around 400.
My advice is, try not to think about the "C" word. Yes, technically this is classed as a cancer, but if you focus on this it can really trouble the mind. Make sure you eat well, exercise and enjoy life. It is hard when it is an invisible disease and you feel nobody understands as they cannot see your symptoms, but this forum is a great source of support.
Hi Emma. I am only 19 years old and was diagnosed with ET 18 months ago at 18 before being rediagnosed with PV 2 months ago!
I completely understand how you feel about being so young. As you can imagine, I am also the youngest at my hospital (and by a long way!). I think being so young and having such a rare illness is hard as it is so hard to find people of a similar age to talk to. Everyone on here is lovely and are so supportive but I think some things are easier to understand with people of similar ages.
I currently only take aspirin as am in the 'low risk' category and my platelets can vary between 1100-1450.
my heart goes out to you and I thank all the wonderful people on this site who have left a post for you.
I was diagnosed with ET at 34, following a pre-wedding "MOT" at the GP and a subsequent trip to a haemotologist. I was lucky enough to have a referral to Prof Victor Hoffbrand, then at the Royal Free - with a few months to our wedding day it was his wisdom I needed as much as his skill and depth of knowledge of what was then called an MPD (d for disorder rather than n for neoplasm). What was I to do? It wasn't just my own future to consider, by my beautiful bride and the family we planned.
To cut a long story short, we went ahead and I must be one of the luckiest men to walk this planet and sail these seas. 23 years later my wife and I are blissfully happy (most of the time) and we have 3 fantastic children. The oldest graduated with a BSc last year, is saving now to go travelling and my oldest boy starts engineering at uni in Plymouth, of all places, at the end of September. My wife thinks our 11 year-old (and a surprise) is so charmed that he will bring about World peace!
So I have several things to say to you with a level of confidence of someone who thought that that his world would implode in his mid thirties.
ET is cancer, but it is at a very manageble level on the scale of things.
There are great advances being made in science, so keep the faith!
Prof Victor used to take double our dose of aspirin every day with no pressing medical condition.
I am NOT a doctor and only they can advise, but at 75mg the dose is tiny compared to what a rheumatoid arthritis patient used to take or even someone with a headache might take today. Aspirin can have side effects, you are right to worry about an acid tummy and it needs checking, but there are many relatively simple to resolve reasons that might be causing it, not least of all the stress and worry of the bombshell you are learning to adapt to. You must let the doctors keep your blood slippery.
Make the time to eat well and share your meals when practical.
Try not to let it get you down. Surround yourself with the people you love when you need them and try to give them something positive when you are low, even something simple. Some times it feels like a burden that is difficult to shake off and you are left feeling frightened and isolated, but you are alone. Be confident - there is a wonderful future for you.
Hi Emma, I would really recommend the buddy scheme which Maz suggested I've found it very helpful. I was diagnosed with ET aged 16, I'm now 34 but only really accessed support in the last 6 years. I was worried when diagnosed about how it would impact on my life but haven't let it define me or stop me doing anything I've wanted to do. I went to uni and for the last 10 years I've worked for the NHS, I currently work full time as a senior manager as well as doing a masters part time. I was worried about if I would be able to have children and thanks to Pegasus and a a great maternity service I have two daughters aged 5 and 2. I've also found the MPN voice patient days very helpful as have found that not all general information on the internet is that helpful particularly for younger patients. I think a positive mental attitude is the best medication!
Hi Emma, you are right that you are very young to have ET, I was in my 50's when diagnosed, (I'm 62 now). It is classed as a cancer, but if you're going to have a cancer it's not such a bad one to get!!
I am on hydroxy and aspirin, I also take lansparazole first thing in the morning (not sure if that's spelt correctly - for my stomach as the aspirin didn't do it a lot of good!
You'll get lots of support from everyone on here. Also don't believe everything you read on the internet - I did until I found this forum - and it scared me to death!
I am 44 and was diagnosed with ET, CALR+, last year. I had never even heard of MPNs until then and was quite unsure what to expect.
I have my good days & bad days the same as everyone else but I have found the best thing that works for me, esp on the bad days, is to find something to laugh at each day. It definitely helps you remain more positive. Also this forum is a great place to read & share info with others, and although I don't often comment, I have found it so supportive.
I am on aspirin & hydroxy. They do, sometimes, give me acid reflux. When this happens I take Gaviscon or ginger cubes which gets rid of it.
I am going to the MPN day in London in November. If you do manage to come, I would be more than happy to say hello.
Good luck with your coffee morning and remember everyone on this site is here for you.
Its a bit rough to get a lifetime disease so young but if its managed properly you should be able to live a near normal life. I was first tested positive for ET at the age of 40 and am now 70 and still living an active life as a Town Crier and a maintenance man for our Britain in Bloom group. In that period I was chief engineer to a large factory in Swindon and father to two girls.
There are days when energy levels can be low but not that many and there are plenty of days when I feel marvelous.
However you are not alone in having a lifetime illness , at the age of 25 my eldest daughter had a spinal non malignant tumour which went undiagnosed for 3 years but was eventually surgically reduced in size. However she has to live with its possible regrowth and the possibility of lower body paralysis. I would have willing welcomed her inheriting my ET instead of the tumour, however life isn't like that.
So get the best advice possible, in the UK that's probably Prof Claire Harrison at Guys hospital. Then get stuck into life.
I was 19 when I was diagnosed and will be turning 40 in a few days time. When I was first diagnosed sites like this didn't exist, there was little information and it was a lonely place. I have 2 blood conditions so not only was I the youngest my consultant had seen with ET but I was and am still the only one with the combination of disorders I have.
This forum is great, I am yet to write a post but i'm a regular reader and respond when I can. Its a wonderful community and offers me a lot of comfort. Whenever you feel you need someone to talk to this is a great place to start. I have ET and my platelets have been as high as 2500, I range between 300-900 these days, we all have good and bad days, but i wanted to reassure that life can still be fulfilling, even with an MPN. I have had 2 children, gone to uni and partied hard like all my friends during my 20-30's. I've slowed down a lot now, but would like to say to you, "grab life with both hands", do what you can, when you can. When I was younger I believe i was in denial, but i now realise it was a blessing, had I pondered on my array of health problems i wouldn't have done the things i did.
Whenever you need an ear, we are all here for you x
I'm 43 and was diagnosed in 2008 at 37. I can't offer a lot more than those that have already posted above, other than to say that I have found this forum and the support that's available from MPD Voice has been really helpful to me. The work Maz and others do is fantastic.
I've found it really helpful just reading through some of the replies to your post. I hope you will get the same. Thanks for posting your comment.
Hi Emma,
I have ET and was diagnosed nearly two years ago. I know that prior to that I had slightly out of range blood tests but nothing was done about it because they were so slightly out of range. When I was finally sent to haematology, the haematologist doubted I had it and thought my raised platelets were down to other rheumatological illnesses I had yet to be diagnosed with.
What I appreciate now is that you cannot let this or any other illness define who you are. It is frightening being diagnosed with a chronic illness. Suddenly you are faced with a new version of yourself and you are no longer sure what you are capable of, how this will affect your working life, social life, your relationships and so on. You can only take one day at a time. 'How do I feel today?', 'Good then, I'll get on with things.'
As for aspirin turning your stomach, have you tried the coated versions? Take it with plenty of food. Yoghurt is good for lining the stomach. If that fails, medicines like Lanzoprazole and Omeprazole are really good for cutting down stomach acid. I used to take them - one of my many illnesses can cause acid reflux. I weened myself of them though because I think the advantages of taking them are outweighed by the disadvantages (for the time being!).
Be careful what you look at on the Internet. I have something called Scleroderma and the things I found out about that on the Internet scared the wits out of me. I was convinced my heart was going to start failing or that my hand were going to curl up and become useless. What helped me over that was meeting other people with the illness who are mainly very active and still working - of course we all have our off days but that only teaches you to make the most of the good days.
Set yourself a challenge. Whether it's sporting, musical, artistic, crafts, find something that will take you out of yourself and go for it. Don't let this be your only focus. You are very young and should make the most of it - spoken as a young person with a few years more experience than you.
I hope you start to feel more hopeful soon.
Hey Emma Louise and welcome, You are young but there are others who are equally as young being diagnosed so you have come to the right place and the buddy system may be a good idea. There was a guy at our recent forum who was 19 when diagnosed and is still only 23 now. I have PV and am older but again was told I was young at 35 to have PV. I don't think our disorders are ageist and it is a sad fact I believe that due to the environment we leave in, the world of fast food and fast living and toxic overload that more and more people like you are being diagnosed earlier.
Happy to chat any time sorry this is a little rushed but off to visit a friend and do her a makeover
All the best, and take care.
Louise xx
I agree that anyone taking aspirin long term should only ever take the enteric coated
I'm 46 and was diagnosed about 4 years ago. My Doc said that problems really start when your platelet count hits 1000. Mine never got that high, but I convinced him to let me stay clean (no meds), did my own research into the symptoms and signs, and asked him what they were also. I asked, for example, regarding the risk of stroke, about the relationship between an enlarged spleen and stroke and he said that most stroke victims who have ET have enlarged spleens. So I asked him to check mine = not enlarged.
A month or two ago, the symptom that I noticed most easily was a very dull tingling in my finger tips (symptom of too many platelets). I also started worrying and felt tired. I decided I would start using the meds, and so he put me on Hydroxyurea ("Hu"). My experience with it is that it makes me use a lot of water. This is partly a good thing because I used to get headaches from drinking too much water and that doesn't happen any more. If I don't eat some salty stuff before going to bed, I have to get up a few times to pee. Hu also doesn't feel very good in my stomach, so I eat food around it. Hunger is an ugly feeling now (it used to just be "dull hunger", now it's "Hu is giving me an ulcer hunger").
I think about stuff a lot (maybe you can tell), and figured out that I will just have to move around more - more exercise, longer walks (I was already walking 30 minutes every morning), etc - to use the extra food I eat to mask the feeling Hu makes in my stomach.
I also looked up foods that tend to suppress platelet production. Ginger, garlic, extra virgin olive oil, strawberries, etc. The standard advice is "Watch out what you eat because it might interfere with your meds." I think that's backwards, so the advice I follow is: "Watch out what meds you take, because if the food you're eating already fixes something, the med might over-fix it." The fact is, that food rarely over-fixes anything, but meds do it all the time.
I've also had to bug Kaiser (health company) to release all my platelet-count results. The medical industry seems to suppress our natural instinct to learn how to internally measure stuff (eg how tingly-fingertips, fatigue, and (I think) the feeling of thick-bloodedness indicate a high platelet count), but that discouragement is to our detriment. So I'm constantly trying to tell.
Another good piece of info is that when we start fighting an illness, our platelet count goes up. I think partly that is a side effect of a general put-the-bone-marrow-on-overdrive strategy to create the army that defeats the invaders.
Also, I keep aspirin near me and pay a lot of attention to the scant suggestions here and there about how to tell if you have a clot somewhere. Aspirin is pretty safe, so anything that suggests to me I might have a clot prompts to chew one up (absorbs faster that way).
I know I've gone on so long already, so this is the last paragraph. Research and read and challenge, and ask questions and since you have the diagnosis, embellish the feeling you have that you have every right to bug people with knowledge who seem to want to write you off or get rid of you. We have a rare "disease" - really just an error in our copy of the human genome - but those errors also account for evolutionary advances. The "defect" that gives us too many platelets might prove of some value if we understand it well enough. Research is empowering, but I've found that it needs to be backed up with empirical evidence, so I pay a lot of attention to myself too.
I was diagnosed in 1999 when I was 19 years old after a blood clot in my leg. Firstly I was put on Hydroxyurea, 4 pills a day to lower my platelets which were at about 1100, but after a month or so the platelets were down to normal range and HU was down to 2 pills a day. I took HU for 6 months but my GP thought it was too dangerous for me considering my age and referred me to another haematologist for interferon treatment. So I've been on interferon for 15 years constantly and my platelets are around 600-700. At the beginning my dose was 3 MIU 3 times a week, but lately it is 6 MIU 3 times a week. I also take 100 mg aspirin a day and never had blood clot again.
I am JAK2 negative, never tried anagrelide because I read that it increases marrow fibrosity, I live in Croatia and here we cannot use pegylated interferon for MPD so I never tried that either and am stuck with plain interferon.
With interferon the trick is to endure first few weeks because after that body gets used to it and you don't have so severe side effects. I used to take 500 mg of paracetamol at the time of injecting and planned time to do the injections in the evening so the side effects happen over night when I'm asleep. Sometimes I needed to take paracetamol during the next day but as the time passed by I no longer needed paracetamol at all.
It is also good to start with small doses so you can try to split one dose on two or three days in the beginning so your body can get used to interferon.
So thats my living with ET so young, I don't let it stop me from doing anything I want, and always try to read and find out as much as possible about my condition. I was a member on two US mailing lists concerning MPDs and I learned a lot there, now there is only one list and I'm a member there and still learning.
If you have any more questions or just want to talk don't hesitate to contact me.
I have mylefibrosis jak 2 + I was 24 when I was diagnosed I had a blood clot and my liver failed leading to my diagnosis i was and still am the youngest patient in clinic at first I found this very difficult from a support aspect because none of my fellow patients had the same problems as me I had a newborn and toddler and being mum on top of my diagnosis was very difficult I may not have the same but I certainly understand where you are coming from and if you ever want a chat I would be happy to best wishes leighanne x
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