need some advice - my 19 year old was diagnosed with ET a year ago - we were talking last night and I feel he doesn’t know enough to ‘own’ his condition if that makes sense - I have a clinical background as a midwife so whilst I get it - it is not my area of expertise! At present he is on aspirin with 6 month check ups with a non MPN specialist haematologist- he is well - the odd migraine - but about to go into the job market for the first time so I feel he needs some info so he can be informed about what to tell his employers
We are in SE London and would appreciate any pointers
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Gordem100
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Have you went into mpn voice that will give him a detailed account of et I was diagnosed in 1994 and I am 59 this year and to be honest I am old school about my et jak2+ but when people talk calr and things like it is over my head but my advice is Google mpn voice and run every single page and tell your son to look on the positives because if he looks on the negative side it has won with you being a midwife my nephew was born with hypoplastic left heart syndrome after three successful ops he is 26 this year and works as an aeronautical engineer graduated in September so just because your son has been diagnosed with et he will as long as he does what consultant tells him he should be fine and print the stuff I told you to and read it and pick out what you think he should read Stay safe
No much help other than to suggest that he see an MPN specialist...it was a game changer for me as it was a professional who thoroughly knew about the condition and could explain in detail and answer any and all questions.
It is very important at age 19 for your son take responsibility for his own healthcare. This requires that he educate himself about the condition. It sounds like he is low risk and relatively symptom free; however the headaches are likely a MPN related microvascular symptom. It is important for him to be aware of what to monitor for in order to be proactive. This needs to be balanced with not living in fear of things that may never happen.
Ideally, he should be consulting with a MPN Specialist. Preferably, a MPN doc who is experienced with the Pediatric/Young Adult MPN population. This is a very small handful of hematologists. MPN Voice has excellent resources in this area including the Young People with MPNs Blog and the fabulous Alice.
Regarding future employers, there is nothing he needs to tell them. His medical condition is none of their business unless he needs a reasonable accommodation in the workplace. There are very few employment situations where his medical information is relevant to employment.
The issue pf Pediatric and Young Adult (PYA) MPNs is an area of active research. One study showed that about 12% of MPN patients were diagnosed age < 40. The number diagnosed age < 18 is lower, one estimate being around 5%.
The reasons for the earlier emergence is likely related to genetic, epigenetic, and environmental factors. It is known that the JAK2 mutation is often acquired in early childhood or in utero. It can take decades for the MPN to manifest. The trigger is something we need to better understand.
My daughter and I were both diagnosed with a MPN in our 30s. We both are positive for the JAK2 46/1 GGCC predisposing haplotype. We are also both positive for another germline gene variant NF1 (c5415C>T p.arg1809sys) . There are a significant number of people on the forum with a similar profile as PYA MPNs, though the number diagnosed age < 18 is considerably smaller.
Check out MPN Voice. They have a whole campaign focussed on young adults with MPNs. There was also a recent major webinar on adolescents / young adults and MPNs - again this should be up on the MPN Voice website.
Since you’re in SE London, you should be within easy striking distance of Guy’s. It would be good to get a referral to the MPN team there. Your son is going to be living with his MPN for a very long time so he should have access to the very best specialist knowledge. The Guy’s team are world leaders and they are behind the MPN Voice focus on young people. Wishing you all the best.
Hello! Glad you found your way to this forum. Have you found MPN Voice? There’s an excellent younger group - lots of young adults, my son included. My son was diagnosed with ET then quite rapidly re diagnosed with MF at age 19 too. He is now 28 and remains well with no treatment thus far. Over the years he’s been in touch with other young MPNers and has been helped by that. The MPN team at Guys Hospital (led by Clare Harrison) has a FANTASTIC young adult cancer team who include young people with an MPNs offering's lots of support, education, info, advice and social events - the team has great professionals in it from a range of disciplines.
definitely get to see an MPN specialist! Go on pubmed, do some research, write down all your questions and then talk with someone more knowledgeable than a haematologist/gp.
19 is very young to be on aspirin, which is not without problems.
When I was diagnosed with ET, one of my main symptoms was severe headaches that would send me to bed for a few hrs a couple of times a week. With my initial blood test, the GP also tested vitamins (B12/D) I was deficient in both. Correcting my B12 deficiency got rid of my headaches within a few weeks ( plus all the other symptoms I went with, except mild erythromyalgia) and they haven’t returned, that was nearly 9 yrs ago. I had to correct my own vit deficiencies as GPs typically clueless ( as was my haematologist) about these .
If your son hasn’t had his vits/ mineral levels checked I would strongly advise it. With B12, I would follow the Japanese advice and treat anything below 500. Always get copies of blood test results so you can look for any patterns. Don’t take any supplements before testing . The b12 test is next to useless but once you are on supplements it’s completely worthless. Once you start supplementing then you go by how you feel, not a blood test.
My platelets have generally stayed around 1400ish these last 8-9yrs. My agreed protocol with the MPN specialist was ½ aspirin once every 3 days which totally keeps erythromyalgia at bay, for me. I researched use of aspirin in ET, took in some papers and we discussed it reaching a mutually agreed treatment plan. That is how medicine should work. Pubmed is great. You need to read the papers yourself.
I feel extremely well, active, travel and don’t find my ET is an issue with anything. What I did find raised my stress levels was seeing a haemotolgist every 6 mths who only looked at test results and not me as a real living person. It didn’t help when on several occasions they took 2 blood tests within an hour and the results showed a huge difference of about 300. Made me seriously doubt the validity of platelet tests especially if on these results alone , they decide to put people on powerful drugs, which often have unpleasant side effects.
If your son has symptoms then treatment may be in order. If not, then medication needs to be strongly questioned and be based on really solid science. If he is feeling well, then maybe a yearly check is also ok, or perhaps just making an appt if he feels there is something not quite right. So yes, see Guys hospital and get on their list and go from there.
The patient is in control of every choice. The doctors advise the patient decides.
All the very best to your son and you with helping him find the right path.
hello Gordem100, I can see that you have been advised to look at the information on our website which is good. And also that Christiev has told you about the Young Patient Network, which I would highly recommend facebook.com/groups/mpnvoic...
I would also recommend that you and your son have a look at the blogs mpnvoice.org.uk/about-us/yo... on our website which were written by Alice, a young ET patient, she was also instrumental in starting up the network.
We also have an information leaflet about the Young Patient Network with lots of very useful information for your son mpnvoice.org.uk/wp-content/...
Hello Our son has PMF diagnosed at 37 he s now almost 56. Never told any of his work colleagues, just gets on with his work .I dont think they need to know. Hope this helps.
Hi, I agree with everything that's been said and certainly your son would benefit from speaking to a haematologist who specialises in MPNs, especially if it's someone at Guy's. There is lots of helpful info on the MPNVoice website but I have several additional thoughts:
- the webinars conducted by MPNVoice are very helpful and yes there was a recent one specifically aimed at young people which should be on the website. The specific MPNVoice networks and blogs may also be very useful and supportive. There's also the buddy program where anyone who's been diagnosed with an MPN can be put in touch with someone similar and with the same diagnosis. Info is on the MPNVoice website and I'm sure the wonderful Maz can tell you more if need be.
- if you aren't already aware, MPNVoice hold a big one day event usually in London later in the year which includes break-out groups for young people, specific MPNs (such as ET) and also parents/carers etc. which you both might find beneficial. I highly recommend the event, you can meet lots of other helpful people, be they patients, specialists, supporting relatives or the lovely people from MPNVoice and the food is great!
- it might be helpful to consider that although your son is in charge of his care, he'll probably need to find his own way with this at a pace that suits him while not being overloaded with too much information too soon.
I was diagnosed with ET at 17 and was only on aspirin for many years. This was in ‘97’ so nothing to read online. At 17 being diagnosed was just something I had and I didn’t really tell anyone or my employer about it as apart from the 6 mthly bloods and occasional bmb it didn’t interfere with my life. As I matured and my treatment changed I began to learn more about the disease and importance of looking after myself but that was in my mid 20’s. There is a lot of scary stuff about the disease online now, that can be very unhelpful. As long as he has a good haematologist that he trusts I’m sure he will grow and learn more about it with time. I always remember my first doctor saying to me this is what you have but you can manage it and you can live a long healthy life. There is a chance of disease progression in the future but we will cross that bridge if or when.
There are booklets on ET that his doctor should be able to provide or MPN website.
Hi . I was diagnosed E.T three years ago. I started out the same . I manged to carry on working as normal.also and only on baby asprin . If his platelets are high though he may end up with fatigue . I would get him to tell his employer. Someone mentioned MPN voice. I also will say I went to my 1st conference last year and it was perfect. There are specialists and other people of all ages with this condition.. I know my symptoms started to hit me harder after a year so just keep pushing for a haematologist to speak to . X
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