Hi guys so today I just got new am jak2 positive I am devastated crying o dont know what to think
What does jak2 positive mean. An worrying about life expectancy and progression what life can I expect? Am 32
Diagnosed essential thrombocytosis new - MPN Voice
Diagnosed essential thrombocytosis new
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Irishgal12
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Please don’t get too upset. There has been so much research in the last 10 years and you will find much of that on this site, as well as so much love and support. Some people have had ET for as much as 30 years and live as normal lives as possible. I would suggest finding an mpn specialist to make sure you are getting the best advice as to what medications you should be taking.
Jak2 is a gene mutation that is very common among mpn sufferers.
I wish you the best!
Cindy
How can they say its et
For me, it was a high platelet count and the Jak2 mutation which was diagnosed during a bmb in 2008. It’s since progressed to Myleofibrosis which was found through another bmb.
, as well as extensive lab work, last September.
I’m also in my early 60’s, so much older. With all the research going on now, you’re in a much better place.
How long did it take to progress
It’s hard to say but probably about 11 years. I developed anemia over a year ago and my hematologist couldn’t figure out how to lower my platelets and raise my hemoglobin at the same time. That’s why I finally changed doctors and she confirmed my suspicions that I had progressed to MF. After 4 months, she finally balanced me out any I feel a lot better.
Just got my bmb yesterday and its ET +1 there is nothing I can do is to accept it and trying to live life.
Sorry to hear what's plus 1 mean
Sorry to hear that. But at least you have a diagnosis and you can get the proper treatment. People can live with ET for many many years, And there’s so much more research into MPNs than when I first was diagnosed 12 years ago. The best advice I can give you is to eat a healthy diet, drink lots of water, and follow the doctors instructions. Never be afraid to ask questions and always be honest with your doctors. If you don’t feel you’re getting listened to, then sometimes it’s best to find an mpn specialist.
I wish you all the best. Let us know how you’re getting along.
Thank you progression is rare isnt it?
Does diet and water help with platlets
Yes, only 10-15% of people progress to myelofibrosis.
The only thing that changes in reality, is just the POSSIBILITY of progress to MF. But you should also know that people below 50 that progress, are only the tenth percent of all progressions. I can totally understand what are you going through, i was in a total black place 7 months ago that i had the diagnosis. I also must have had ET at least twenty years according to older blood counts. My doctor told me that people who have the Jac2 mutation, have ~7% odds of progress, while everybody else ~15%. It is a big shock what are you going through but my doctor also told me that i must not worry and keep on with my life,travel,make babies,buy a house and whatever i want and have faith in medicine and science. I don't have a good advice, i am also stressed about it,but i try EVERYDAY to think and remind myself that there are good chances of a good disease modifying drug in case of progress. He also told me that if i progress this would be possible around my 60-70s and from there on, extra 10-15 years. Only with current drugs.
Have a look on mpnvoice.org.uk this will tell you all you need to know. The information you will read is correct and up to date. Founded by Prof Harrison a world renowned expert. Maz can also send you booklets and arrange for you to have a buddy, someone who has ET like you, who you can speak to and e mail.
There are many people on this forum who have had ET for many, many years, worked, had babies and carried on as normal.
As cancers go MPN’s are the best ones to have.
You are far more likely to make yourself ill from worrying than you are from the ET.
Good luck
Judy
Thank you I am so sad at the moment so many questions dont know what to do x
Hello Irishgal, I have ET JAK2 positive, diagnosed nearly seven years ago now, and like you I thought my life was over, but I am a lot older than you 🤪that was until I joined this forum and have never looked back, so much good advice from people in the same boat as you, we are indeed a very rare bunch and here to help each other.
Having ET is not a life sentence you just learn to live with it, I take Hydroxycarbamide and Aspirin along with some other tablets which I have taken for years. Before I was told I had ET, my health had been dreadful constantly had something wrong with me for many, many years, I can actually say that all my problems started in my thirties but there was no diagnosis just one infection after another then some heart problems which I now thing was my ET starting.
Now I keep fit with exercise daily, eat well, plenty of fruit and veg and drink at least two Litres of water Daily that’s if you are on any of the drugs that are available, you don’t say if you are watch and wait or if you are being prescribed one on the many drugs that we have at our disposal, normally once you are on them and monitored for a few months your bloods become controlled and for me have all been in the normal range for a long time, I now see my Haematologist every four months, and this has always had a very reassuring effect on me.
Now when I am out socially with friends and family they cannot believe that I have a blood cancer as I look so well, maybe that’s because I have not let it define me as a person, put my makeup on do my hair everyday without fail standards must be kept I say 😉 even have my hair coloured with two colours every five weeks, plus I still enjoy a glass or two of wine when out socially, just drink a bit more water to help with any dehydration that wine or alcohol can do.
ET is not a life sentence, you can go on to live a normal life, have children that’s if you want children!!! There are people on this forum who have lived with an MPN for more than thirty years and are still going strong.
If you want anymore information as Judy says, get in touch with Maz on the MPN website, she can send you more information plus if you want more reassurance she can organise a buddy for you, this is someone you can talk too who has the same condition but for some time, and they know exactly what you are going through. It’s just great to have someone to talk to when you feel at your lowest, if not we are always here for each other.
Take care
Jean x
Thank u so much am such a worrier anyway without this am just scared so many things I don't know x
Am not on drugs only aspirin even worry taking that. See haematologist fri hope to get more answers platelets 574
PS your platelets are very low actually, mine were 920 000 and climbing in my early days of this disease. So, thats actually good news for you.
Yes I just hope they stay that way I worry how quickly they climb and if I may need chemo soon x
My platelets since 2003 (even i didn't have a diagnosis until this summer) are between 380-530.
Hi Aneliv9. How did they diagnose you with ET? 380 is a normal platelet count and if they fluctuate between normal (380) and higher end of normal (530) I would never even think of ET because apparently they can increase due to something like a cold/flu, anxiety, inflammation etc. I'm wondering what is the diagnosing criteria and if hematologists are just randomly diagnosing people with an MPN simply because of their platelets/rbc's/wbc's being high for a while when it can be a variety of reasons that were probably not ruled out. Also saw a video that 2.5% of the population have high platelets or low platelets due to a curve and are completely healthy. Was it a BMB that gave the diagnosis?
I had a BMB for the diagnosis! And if my spleen wasn't borderline big (14cm), i would have never asked about BMB. Cause i insisted about it. My doctor and my heam believed that i should wait and take someiron supplies first.. but i was anxious to learn what was going on , so i asked for the BMB. Imagine...
Hi. The JAK2 positive result just means that the defect on the chromosome that is causing the ET has been identified, and that is a good thing to know. Right now you feel awful, and that’s totally understandable. Have a good cry.
And then, if you want, you can make contact with other young women with ET through the buddy system Maz rund.
As you are are young, its even more important to be treated by an MPN specialist team, because there will lots of new treatments coming out during your ( close to normal, on present estimates) lifespan. You may also have questions about pregnancy and childbirth with ET.
Lots of love , and keep in touch
Rachel
How to I get in contact with maz?
I will be asking to see mpn specialist as I want more kids but they will prob deny it
Maz is the site administrator. PM
her for a buddy? . Or put yr request in the headline
Hi Irishgal, I did send you some private messages last weekend, so you can contact me that way. You can contact me about a buddy by emailing me at buddies@mpnvoice.org.uk
Yes me too I was 32 years old just like having high platelets but I was not diagnosed as ET because I was not able to go to an especialist doctor of blood like hema as I know it like I was so upset, i can't accept it, i can't believe it and wanted to end my life. Now I am 35 and still struggling with the disease and the meds . Just pray that you can cope with it. And learn to accept realities in life. Like you I am still young and single worrying about having a family. Having children as it affects my daily if I have them. With this disease its hard but we need to accept realities and that there is nothing we can do.
Hi there.
Glad you finally have a definitive diagnosis. And it’s looking pretty good. The JAK2 mutation is one of the markers for MPNs and it’s provided you with the precise answer you were seeking. It’s possible your haematologist will order a bone marrow biopsy but there’s every chance they think you have clearly met the WHO criteria for a diagnosis of ET. Your platelets are not far off normal and from everything you’ve told us, you’re more or less symptom free. Added to which you’re young and otherwise healthy.
The biggest issue for you (which I think you’ve acknowledged) is your anxiety. I know you’ve scoured this Forum over the past weeks for information on, and insights into, disease progression, life expectancy, ability to work, pregnancy and a host of other concerns. You’ll know that while some people do have issues here and there, for the vast majority - especially younger MPNers it’s ‘business as usual’. And often those who raise issues have other compromising health concerns, including, simply getting on in years.
So, take a deep breath. Go look at the MPN Voice website and prepare a list of questions to ask your haematologist when you see him / her next. And please, tell them how anxious you feel. Chances are there is someone in the department or in the wider oncology clinic who can help you manage the psychological aspects of your diagnosis.
Wishing you all the best.
Thank you I have lots of questions an scared i will be rushed at my appointment. I need some counselling to deal with this I cant get cancer out of my head and am scared of the future or having a stroke
I can totally understand all of that. When I was first diagnosed - out of the blue - I was convinced I was going to drop dead the very next second, or the one after that, or indeed the one after that. And back then ET wasn’t even called a ‘cancer’. It was just a rare blood disease. Funnily enough, seven years on and I appear to still be alive and kicking!
And lots of stuff has happened in the interim. The things that go with having three kids - birthdays, exams, changes of school, start of university, holidays, laughter, dramas - the day to day good stuff and the, er, challenging stuff too! Life really doesn’t stop. And you’re lucky because you have a young child and are looking forward to growing your family. How exciting and distracting is that?
As for feeling rushed in the appointment - go with your list of questions. That way your consultant can focus on the things you want answered and you won’t worry about forgetting to ask something.
Above all, please try to stay in the present and stop worrying about all those things that aren’t and may never be. And enjoy your little one.
Hi. I’m so sorry about your diagnosis. Some of us “old timers” on this forum have seen reactions just like yours from lots of people on here. It may be hard for you to believe right now but in a year you will probably be calm and not at all anxious about your diagnosis. The ideas above are all really good. I’d like to add one suggestion. You’ve been extremely nervous about this for awhile & some folks, me included, worry more than is healthy for us. As someone said above, that kind of worrying can make us sick. So please consider getting some help for your stress. Talk therapy with a professional is very beneficial & you might want to consider some medication right now to help you be less frightened. Many folks with MPNS find they have anxiety & depression which is very normal. And things like relaxation breathing, yoga, meditation tai chi, etc are very beneficial for many of us. Right now please try & release that your diagnosis is NOT that you have terminal cancer. You have a very indolent form of cancer that may not ever adversely affect you. Try not to worry about what doesn’t exist & think about the beautiful things in your life that do exist. And don’t forget all the support and caring you have from us. We’re here to help. Katie
Thank u I feel so touched by the support from u all already xx
Hiya,
I was 26 when diagnosed and still alive and kicking 19 years later. You are so lucky as you have a huge volume of information (accurate information) at your fingertips that I certainly didn't have. The internet was very new 19 years ago so I had no connection to a forum such as this one. My advice to you is to request as many pamphlets and booklets form MPN voice - all your questions will be answered and you might get some ease. My second piece of advice?? Don't focus on this so much!!!! You'll make no difference to your condition and may even get into ill health from stress!! It's certainly not the end of the world.
Don't fret, Karol
Thank u what are the symptoms associated
Hi Irishgal12. Do not focus on the symptoms as you will more than likely never experience them but if you do focus on them, then the mind becomes a powerful tool and you may think you are experiencing them when in fact its psychosomatic in all reality. Right now your biggest problem appears to be all the anxiety you have built up over the last few weeks and this as led to all the stress your going through. As your Gp given you anything for this as I seem to remember you were to see them? At the moment your anxiety is the number one priority and must be sorted so you then can better deal with your diagnosis. Sending warm wishes.tina🤗
Yes I am on medication I feel i need therapy to help with this diagnosis
Bit this diagnosis is going to make my anxiety worse
I'm so sorry to hear your news about being Jak 2 positive. Your reaction is understandable but take comfort from the advice, experience and support on this site.
Before you see your haematologist put your questions and concerns down in writing and give a copy to your haematologist. Take some with you to the appointment and have them see the doctor with you. Having someone else to listen to the answers and take notes is important.
Finally, look out for news about the next MPN patient forums in your area. Meeting people with your condition is reassuring and informative.
Thank u were are support groups advertised
Four patient forums just announced on the MPNVOICE website Chippenham, Oxford, Galway and Chester. Others likely to follow.
It is a shock at first especially as it is controversially diagnosed as a blood cancer. Jak2 pos means you have a mutation on chromosome 9 which makes your bone marrow produce too many red blood cells, leading to blood thickening. It doesn't affect life expectancy, and as you're young, you probably will get away with taking an aspirin a day to thin your blood. The risks are blood clots, heart attacks, strokes, but in older people I think.
Apparently I have had this since 2006 but it has just been picked up. You are not high risk so try not to worry. I have accepted it now. Regards Cassie11.
Thank you how did u accept it. I feel its always in my head
I decided not to worry about it as I have just come out of 7 months depression and anxiety unrelated to this, or it is my mind's way of protecting me from further stress. Try not to worry, it is not a serious illness and I think it can be cured with aspirin in your case and you are young. Take care.
Oh, that's interesting. What you say means that, with not enough red blood cells, I cannot have JAK2. It's my white blood cells that are proliferating. I have yet to find out if it is another gene that has mutated. Amazing what info we pick up from chance remarks here. Thanks.
Hi Irishgal12,
It must feel like a massive shock right now. I was diagnosed with ET in March 2019, aged 36, and just about 6 months pregnant with my second child. I was as terrified as you probably feel now - especially as it meant my pregnancy was then treated as high risk as a precaution. Bump is now a wonderful bouncing six month old little girl.
As others have said, it may take some months to comes to terms with your diagnosis but the first thing my Haematologist said on diagnosis is to expect a “normal” life expectancy. And seeing your reference to more children, she has told me a number of times that if I wanted more children the ET is in no way a barrier to that - just tell them beforehand so she can help manage any risks. My platelet counts post-pregnancy have stabilised in the 1,200 range, but despite the high platelet counts I am still considered low risk due to age and lack of any other medical concerns.
Try not to worry too much. Having ET may be a new normal for you that may just take some adjusting in your head and thoughts but I am sure you too can make peace with this and life really will carry on soon. Xx
You're all amazing with your wonderful, calming advice. You're in good hands here Irishgal and I for one am thankful for being able to tap in . As others have said, if you can find methods to deal with the stress , it will be enormously helpful for you .Mindfulness and meditation are very good .or if that's not your bag -walking and any form of exercise are great too .Ideally all of it 😊 I was diagnosed with ET a year ago following a small stroke . It's been a journey but things settling and stabilising 🙏 Life is beginning to get back to normal .But now with a new appreciation of what's important and a new attitude of taking time to 'smell the roses' . I've also given up my job as a school teacher and am starting as a mindfulness teacher and celebrant .( but only doing bits n pieces) Thats not actually a bad thing n I see that as the upside of what was a traumatic experience . Onwards n upwards . Take care xx
Sorry to hear this Irishgal12.
I can’t add to the wonderful comments and advice that you’ve had already, other than you will not always feel the way you do right now.
I hope not xx
Hi I was diagnosed with ET at 35 and am now 68 so I think you are needlessly worrying yourself, don’t let it take over your life, life is for living!!
Reassuring do u take meds x
Hydroxy and aspirin for the last 20 years x
No prob?
Mainly dry skin patches on my face, last year a SCC and a BCC removed from my cheek but it’s mainly a case of sun protection if your on Hydroxy
This is what I worry about with these meds
Yea but It took over 30 years for that to happen plus I worked outside all my working life ( farmer ) so I don’t think you need to worry
After all these wonderful replies, you must be feeling better already. I can see as your postings progress that you are. I just think you should be given more support at the hospital you attend. I attend the Macmillan Centre to see my haematologist and I can talk to someone there, the nurses etc at any time. Not that I did! I have recently had a chat over the phone to a dedicated nurse and to the lady in the information centre. I still don't know everything about what I have, but I have picked up today - from this forum - that I am unlikely to have JAK2. But that's only one gene that can go wrong. Presumably I have another one. At the end of the day, it's of no consequence what gene is mutated but what effect it is having on your blood, and then how you feel as a result of that.
Go get some counseling, and one day you will be one of the people on here who are encouraging others, with your own story of how you are living a normal life, no matter what names are given to your condition. I thought your diagnosis wasn't due yet, so it's really good that that milestone has been overcome. Go and enjoy your life - you have so much of it to live.
Love, Maggie
I am also JAK2 positive. I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I suppose it is possible that it was masked PV all along. Regardless, I am fortunate to have a relatively indolent form of a MPN. I have had no incidents of thrombosis nor any of the more serious complications. I did have Stage 1 hypertension, but it returned to normal after the erythrocytes were controlled by phlebotomy. Here is the main thing - I am 64, alive and kicking, have had and continue to have a long rich life. Sure there have been some challenges, but we deal and carry on.
The important thing to do at this point is to get educated about what this all means so you can make good decisions about your own care. You do need to sort out the wheat from the chaff when researching on-line, but there is good information out there. Find the reliable sources (like this site), MPN Research Foundation, MPN Forum Magazine, MPN-Mate, and the professional journals. You can use the patient education sites to gain a basic foundation re. MPNs. The professional literature will help gain a more comprehensive understanding, but expect to do a lot of secondary reading to comprehend what you are reading.
JAK2 = Janus Kinase 2 gene. The JAK2 system is one of the body's kinase systems that regulates many bodily activities: hematopoiesis, cytokine regulation, growth factors, hormones, tumorigenesis, apoptosis, and more. The JAK-STAT pathway does lots of things beside driving the production of blood cells (e.g. thrombocytosis). There are different kinds of mutations. Most JAK2 mutations are G-transversions (a type of base substitution). The percentage of the gene showing the mutation is significant in predicting symptom burden and prognosis. This is called the JAK2 mutant allele burden. Less then 50% is considered indicative of a milder course of a MPN. If you see a % associated with the lab showing the JAK2 mutation - that will be your allele burden. If has not been checked, request a JAK2 mutant allele quantitative analysis.
FYI - I have had more trouble with the systemic inflammation that can accompany the JAK2 mutation than with the MPN symptoms per se. The overload of inflammatory cytokines, for me, results in: osteoarthritis, eczema, insomnia, plantars fasciitis, GERD etc. Controlling inflammation is very important in managing the impact of the JAK2 mutation. Some of the emerging research is beginning to look at MPNs as an inflammatory disorder.
There is a lot of really good information out there. There is some really promising research emerging and hope for the future. Please do not despair as you can look forward to a long life, even if there are some challenges along the way. In the absence of thrombosis or other significant symptoms, the normal treatment protocol would be for aspirin-only and monitor. I did that for most of my 30+ years with a MPN with no problems.
Here are a few things to get you started.
List of MPN expert docs mpnforum.com/list-hem./
Importance of Individualized Treatment youtube.com/watch?v=Y50S-Uz...
ET Treatment (this is just one of the protocols)
ncbi.nlm.nih.gov/pmc/articl...
More on JAK2
sciencedirect.com/science/a...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
There is lots more to read on this topic
Cytokines-MPNs-Inflammation
sciencedirect.com/science/a...
youtube.com/watch?v=FzyoPAG...
I hope this helps. The most important thing to learn in my experience is that educated and assertive patients receive higher quality care. Passive patients do not. Please do empower yourself to manage your MPN and know that you have both the right and the responsibility to be in charge of your own treatment. You are NOT powerless in the face of this MPN nor in managing your care in whatever healthcare system you use.
All the best
Really helpful thank you. I will ask my haematologist I didt know jak2 mutation was a percentage i thought it either positive or negative. I also want to br referred to a mpn specialist I doubt they will as my count isnt that bad. I want to be assertive but how if they say no?
Also u guys seem to mention a lot of water and certain diets any particular reason?
"No" is not an acceptable answer. You need and deserve to see a MPN Specialist. Do whatever it takes to make it so. The way I work it is that I have a really great local hematologist who provides my ongoing care and a MPN Specialist (2 hours away) who consults and provides us with expert input.
The issue with hydration is two-fold. It helps with decreasing the viscosity of your blood. It also helps to manage the toxicity of various chemotherapies. Aside from the increased importance of proactively managing your health through a healthy diet, much of what you may be seeing has to do with an anti-inflammatory diet. The JAK2 mutation drives systemic inflammation that is a key part of the MPN primary and secondary symptoms. Managing inflammation is very important to your health and quality of life. I do this with a combination of diet and some specific supplements.
All the best.
Sorry what do u mean by inflammation
From Live Science livescience.com/52344-infla...
Inflammation is a vital part of the immune system's response to injury and infection. It is the body's way of signaling the immune system to heal and repair damaged tissue, as well as defend itself against foreign invaders, such as viruses and bacteria.
Without inflammation as a physiological response, wounds would fester, and infections could become deadly.
However, if the inflammatory process goes on for too long or if the inflammatory response occurs in places where it is not needed, it can become problematic. Chronic inflammation has been linked to certain diseases such as heart disease or stroke, and may also lead to autoimmune disorders, such as rheumatoid arthritis and lupus. But a healthy diet and lifestyle can help keep inflammation under control.
So the short version is that inflammation is a part of the body's healthy response to infection or injury. The problem is that the JAK2 Mutation can trigger an inflammatory response when it should not be occurring, which causes various diseases.
Don’t panic (easy to say but we all did at initial diagnosis!).
ET is a very slow acting illness that if properly controlled has no effect on life expectancy and many of us have few if any symptoms from either ET itself or from treatment.
I was diagnosed over 16 years ago at age 47 and am still leading a very normal life as I approach 64 - I’m convinced that my various aches, pains and tiredness have more to do with age than ET..!
There is lots of good advice and information on the MPN Voice website and you can request a buddy if you’d like to talk to someone who has been through the same experience of diagnosis etc as you.
Glad you got the diagnosis as I know you were worrying. I’ve got the same and hasn’t really affected me much at all.
Essential to keep hydrated and eat healthy and you’ll be fine, I’m sure.
I guess we have a choice when we’re diagnosed;
1. Wallow and worry about what might or might not happen.
2. Listen to the great advice from the community here, take the advice from the haemo and carry on with our lives.
I did no 2 and am getting along fine👍
All the best , x
Thank u they are doing bmb to confirm so worried that will show worse.
I want to number 2 but really struggling
What is the reason they have given for you to have a bmb?
To confirm et ?
But they can do that with a blood test now. I didn’t have to have a bmb 👍
Am not sure thats what he said
I just had to have a blood test at the hospital and that confirmed ET Jak 2 +
No need for a bmb .
Am worried now
Please do not worry about having a BMB when other people have not, it means nothing. Maz asked Prof Harrison this question 3 years ago and this was her response.
‘And this is the answer, from Professor Claire Harrison, Guy’s and St Thomas’ Hospital, London.
Confusing information and some different opinions.
When a diagnosis of a MPN is made the team use specific national/international diagnostic criteria. Some of these mandate a bone marrow biopsy and some do not, some only mandate a biopsy in specific circumstances.
Aside from making an accurate diagnosis sometimes having a bone marrow done is a useful test for future information even if not needed for a diagnosis.
Sometimes BMBs are performed during the course of disease usually if there is a change in disease features, sometimes before a change in treatment, sometimes but not often to monitor a treatment, and lastly sometimes before a clinical trial.’
Hi! Don’t worry! I have the same diagnoses. I am 46. I was diagnosed three years ago. I devistated when I found out. I cried for days. I am ok now. I take a baby asprin daily. My only issue is fatigue. Some days are good and some days I am exhausted. Take care! You will be fine!😊
Thank you have your platelets got higher
Sometimes my platelets are a little higher or a little lower. Not really a major change.
Are they high
I had my platelets checked in July and they were 478. I am on asprin.
Mine were 550
Do you feel tired all the time?
It's hard to say for years I always felt like I could sleep lots like I never have enough but I suffer with depression so put it down to that. U?
I can identify with that. I’ve suffered with depression all my life and have been known to sleep for literally days on end; I describe myself as an epic sleeper. I was diagnosed ET JAK2+ November 2019 (aged 37). Seems we have a few common traits...
I feel very tired sometimes. I have a lot of stress. I don’t sleep well.
What's your stress xx
I am divorced. I have two kids. My ex doesn’t help. He’s crazy!
I have been diagnosed for 5 years and am leading a totally normal life. I am nearly 70. I hope you feel well enough to be able to try to take positive lead on this, it will, I am sure, help with your day to day life. I will not let it overpower me.
Thank u for now on aspirin but I do worry a lot about the future and needing chemo drugs
Hi everyone
I’ve been diagnosed with ET 3 days ago. It’s been a shock. I’m 35 and have a little daughter. I have a lot of Neurological symptoms so I’m not sure how they’re going to manage me yet. First day was shock second day a lot of crying, same 3rd day. But a read a few threads where people on this forum have shared their experiences of life expectancy when they were diagnosed how they were treated etc and just wanted to thank you all for giving hope. As many people put on their threads let hope were all getting birthday cards from the queen (or king)when we’re 100☺️
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Hi hun sorry to hear this i know exactly how u feel. I can say it does get easier its difficult to accept. I still have times when I worry xx
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