Out of curiosity how many of us have family with an MPN, I was always led to believe it was genetic changes in genes as we got older not hereditary, but my poor Mum has been ill on and off for a number of years and Doc’s can’t seem to get to the bottom of it, sometimes I look at her and think my goodness you look like I feel on a bad day but some days really good 🤷♀️symptoms are Angina attacks, balance issues , loss of hearing in one ear, always cold, pain in back of neck, fatigue doesn’t cope with stress.
Can ET & PV Hereditary: Out of curiosity how many... - MPN Voice
Can ET & PV Hereditary
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Mustang50
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The JAK2 mutation is acquired after conception, but often much earlier than the disease appears. The mutation can be acquired in early childhood decades before the disease manifests.
hematology.org/newsroom/pre...
biorxiv.org/content/10.1101...
You would be correct to think that there are families with a cluster of MPNs. "It has been reported that 7·6% of apparently sporadic MPN are familial, and relatives of MPN patients have a five- to seven-fold increased risk of developing MPN." Rumi, Cazzola. British Journal of Haematology, April 2017). onlinelibrary.wiley.com/doi...
Familial MPNs is a specific area about which we are learning more. The JAK2 46/1 (GGCC) MPN-predisposing haplotype is one of the potential reasons why we see familial MPN clusters. The short version is that this haplotype predisposes a person to acquire the JAK2 mutation.
onlinelibrary.wiley.com/doi...
ncbi.nlm.nih.gov/pmc/articl...
Hope that answers your question.
Thank you as always for your informative info hunter will look it up, truly grateful!
Thanks Hunter, my father was poorly and now I think he had it too.
Yes - my daughter was diagnosed 18 years ago with ET, I was diagnosed 4 years ago with PV.
There is some research going on into familial tendencies in Oxford, I believe.
Sorry to hear this but thanks for replying!
Familial MPNs do affect a number of us on the forum. My daughter also has the JAK2 mutation and is currently diagnosed with ET. She may progress into PV as I did. We both tested positive for the JAK2 46/1 (GGCC) haplotype. My son tested JAK2 negative, but has erythrocytosis which is currently unexplained. All three us us have another genetic condition, Neurofibromatosis Type 1, which is an inherited condition. Genetics matter quite a lot in health.
Nobody that I know of in my immediate family has an MPN, but I'm in Israel and see that these diseases are floating around the gene pool in Ashkenazi Jewish people. Many people here have them, so much so that even non-hematology nurses like my next door neighbor, know the symptoms. I personally know 5 people with PV, and a local GP has 6 PV patients in his practice. This is just one doctor out of many in this small city. One good thing - there was no danger of misdiagnosis.
I find this fascinating-I can’t imagine being around so many people with MPNs. I’m Ashkenazi and live in the US. Is treatment or perspective about MPNs different in Israel?
No difference here in treatment, it's just that many health professionals here are acquainted with these diseases, so I don't have to keep explaining myself over and over again.
I have Et with JAK 2 mutation. My mum also had a rare form of blood cancer, Waldenstroms Globulinaemia, which affects production of white blood cells. My consultant said there's no connection between my condition and hers, but I do wonder.
Yes this makes me wonder too sorry to hear this, is just how it’s different symptoms all over the body different weeks which was exactly how I was you couldn’t pin point any one thing, it was only continuous back & forth to health centre that finally I got diagnosed after 5years 🙈she won’t push it just think it’s getting old 🙈thanks for reply!
I have seen a statement by a MPN specialist in the US ( can't remember his name) that all MPNs are caused by environmental issues, in other words chemicals that we absorb in products and food. I know my ET / MF was caused by Benzene in petroleum products. If there are family similarities, maybe similar exposures. There are a lot of videos etc relating to Benzene and its dangers. It is highly toxic and compounds are unstable. For example Sodium Benzoate which is used as a preservative in foods and cosmetics. We have been poisoned, and all today's children are heading the same way, unless some action is taken to stop these chemicals being used. Look at food and product ingredients for the letters benz...It's very scary.
Interesting reply will read up on this as I’m a hairdresser so prob exposed to it through colour or something 👍
My mom was a hairdresser in the 40's. I don't think they did chemical perms then as I remember one of the old electric perm machines with wires hanging down stored in the attic, but she may been exposed to hair dye. She was certainly exposed to something because she had spontanious bruises the size of a grapefruit on her arms in her late 50's and 60's. She also had the skin sensitivity that I have now. She was never diagnosed,, but she didn't like to go to doctors either. I was diagnosed with ET in my early 60's. A couple of years before I was diagnosed, I was also exposed to benzene in a Park's product used to clean dried latex paint out of paint brushes. I've searched for research that proves Benzene can cause ET, but can find none. Does anyone know of any?
I have been trumpeting this for about 6 years! Since removing 90% of the chemicals in our food (and GMOs) and 100% from my home, we all have a new, healthier life, physically and mentally. The changes are HUGE! Almost Nothing produced by human hands comes onto our table or on our bodies! 😁
Yes, most MPNs are caused by mutations. Somewhere around 7% are hereditary. It’s proven above.
on the other hand, what I’ve learned about genetics is that genes can be turned on or off. This is called epi-genetics. Therefore, if we happen to have certain genes, it doesn’t mean they have to affect us. Although members of the same family, we have a certain mutations, not all of them may become sick. That’s where the environment plays a very big role. Environmental toxins and stress. Both physical and mental can turn on the genes, through inflammation, etc. and make people susceptible to illnesses. On the other hand, protecting ourselves from these influences, can keep us healthy. 😁
Benzene and sodium benzoate are completely different things and will not be converted from one into the other without undergoing some pretty powerful chemical reactions that are not accessible in living organisms. Agreed: benzene is definitely dangerous; sodium benzoate isn't.
We're all entitled to our opinion, but I have seen plenty of reports from very knowledgeable experts that Benzene compounds are unstable. If you are happy to consume them, best of luck. I can tell you that myelofibrosis isnot something you would wish on anyone.
More thoughts as I sit in my hospital bed with a heart condition related to MF, if these compounds are SAFE, why are more children being diagnosed with Autism, ADHD, and allergies, and how do we explain to them ìn 20 years time that we allowed their use to be continued ?
I am truly sorry that you have to suffer with MF and that you are in a hospital bed with a heart condition. You are right that the big increase in autism, ADHD and some allergies cannot be explained. I did not wish to appear snarky when I responded previously. By the way, I am retired as a professor of biophysics with a PhD in chemistry, and I too have MF. I'm afraid that the chemistry I cited is correct.
Thank you, but it just highlights what a complex issue it is. But it concerns me that so little unbiased research has been carried out. I'm sure you will share my concern that we are exposed to so many chemicals in food and other products,which are used to lengthen shelf life and reduce costs, and there must be some interactions which have not been considered, or ignored.The use of some pesticides is of concern when it is revealed that they are designed to cause mutations in insects, and when we sharesome of our DNA with them there must surely be a risk that mutations could occur in humans.
Neotinonicoids were banned in Europe but the UK government have recently allowed their use on sugarbeet crops.
Artificial sweetners and colours arealso an area of concern, which are said to safe, but from personal experience I have witnessed the effect they can have on children.
A family friend has recently been diagnosed with terminal digestive cancer, an advocate of diet drinks. It must surely ring alarm bells, but how do you research such issues when you are up against such powerful businesses?
Yes, like you, I have been concerned by the consumption and contact with other unnatural compounds. Those who are supposed to test the compounds are overwhelmed by the moneyed interests and the shear number of them. We all are subject to exposures that our ancestors did not face. I have thought a lot about the issue with no useful insight, since my 19-year-old grandson is on the autism spectrum and was exposed to everything typical of most American kids. If I was "to rule the world", nobody before age 2 would be able to see or hear electronic gizmos, eat anything that had been subjected to pesticides or preservatives, nor wear anything that had been treated with flame retardants. Likewise, the mother would eat only nourishing food and no alcohol or recreational drugs while pregnant or nursing. Then, too, there may be genetic aspects that make a particular infant more susceptible than others to these external insults.
Thanks TLJ, my family ran a garage,selling petrol, and I remember a brand called National Benzole which had a different sweet smell, and it was very popular, but suddenly disappeared off the market, so presume it contained Benzene, which may account for my ET /MF which my haemotologist is convinced is Benzene related.All these issues are too late for us with MPNs, but I can only hope that we can make those younger and future generations aware of the dangers and try to avoid, and not be brainwashed into consuming by modern marketing which tries to tell everyone that if we use their product life will be wonderful.
Now I am retired,I have the time between hospital visits, to do things like beekeeping, which has taught me a lot about nature and the circle of life. My bees have been chemical free for the last 3 years, which meant I lost some colonies, but now I feel that any honey I sell (as much as I can produce) is as healthy as it can be. There does seem to be a growing numbers of beekeepers in the UK, who want to operate in a sustainable way, and will gradually convince others that no chemicals is the way to go.
I was surprised to learn that Organic food and products my contain manufactured chemicals.l hope your family and friends will protect themselves from all these hazards.
I believe we have a family cluster of it. My mother was diagnosed with PV June 2022. We remembered that her sister (died 2012) had struggled with a blood disorder for years before she passed but she was so private about it we had to piece together bits from what various family members knew about it and it sure sounds the same. Her son's wife called me a couple of weeks ago to ask more details about what my mother has because his bloodwork is off and his doctor suspects PV and is doing more testing.
My mother's father died of a massive heart attack at 62 and he was the longest lived of all his siblings save one (and one who died in the war) and ALL of them died young of heart attacks. My cousin mentioned above, also had a heart attack about 6 years ago in his 40s. My oldest sister had a TIA in her 40s. She spoke with her doctor after Mom's PV diagnosis and she's having the genetic testing done now and is going to want her kids to have it done as well.
Best wishes for you and your mom.
I have PV, and one of my uncles (mother's brother) also had it.
Much appreciate your reply amazed at results of every bodies fed back and at how many people have family with a related condition .
Also, my mother dealt with clotting issues for many decades. I don't know if she had other symptoms suggestive of MPNs.
Makes you wonder
I recently tested JAK2 positive with ET. I called my sister to tell her and she informed me that she was diagnosed with it a few years ago. We told our brother to get tested.
I have PV, and my sister in Italy is currently waiting for the results of her Jak 2 bloods. She has low ferritin, raised HCT, HB etc....and many of the same symptoms as me xMy consultant informed me that she has 3 lots of family members who attend her MPN clinics too x
Rachel x
I have ET. My grandmother died of nosebleeds. This was in Greece 1947, in a village in a home with earthen floors. There were no blood tests or anything. She had a nosebleed for about three years and one day she didn’t wake up having lost too much blood from a nose bleed over night. I will never know if she has my mutation. She was 57 I am now 58.
Awwwww that was awful for her if only people were make more aware
they didnt know what to do. They had just gotten through the nazi occupation WWII in Greece and the civil war (communists vs. government) was in full flow. Brother against brother. I can’t imagine what kind of lives they had. We live in paradise. My mother was only 19.
Hi
I have PV and my 22 yr old daughter has ET. After I was diagnosed in 2020 had her tested because she suffered from headaches and whip lash like neck pain. It all cleared up with a baby aspirin each day.
Jak2 positive both. I have many siblings so if it shows up again in the family we will not be surprised.
I have ET Jak 2 and my father had MF.
I know. I was staggered too as it was a question I asked when I was diagnosed as to whether it may affect my two adult children. It was a concern for them obviously. I was told it can be " familial" but it appears there are far more of us with it routed in our families than we would have imagined.
Exactly a concern for us all unfortunately
I have JAK2+ MPN (looking like PV - I haven’t had a bone marrow biopsy.) My mother had MF. She died in the mid 90s. Looking back, she’d had several bad nose bleeds over the previous few years. There was no internet then so we never made the connection.
Despite being told by my haematologist that JAK2 mutation and, in my case ET, is not hereditary, I do wonder if it is familial. My mother and her brother had heart attacks and strokes and their sister had spinal tumours which I gather can be another manifestation. All these 3 died 35/40 years ago, before there was much research available. I try to impress upon my relatives and espy my adult children, the importance of getting checked.
Most definitely!
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