Good morning I am corresponding from the USA . Back in 2020 my blood work came back abnormal and I was referred to an oncologist at Cleveland Ohio hospital. After future testing it was determined that I had Jak 2 gene and was diagnosed with both polycythemia vera and hemochromatosis. Which my Dr said I was his first patient with both diagnosis. We began phelbotomies and as a result i experienced extreme fatigue. However against my Dr’s advice I discontinued the phelbotomies. I appeared to do well until recently when my primary care physican noticed that my blood pressure was close to 200 and sent my to the ER. While in ER I connected with a new oncologist and started the phelbotomies again. However the new oncologist want me start the medication hydroxyurea. After doing some research on the side effects, I declined the medication. I am now listed as a non compliant patient. I continue with the phelbotomies which seem to give me some relief. However it is impossible to find a support group in the city and would very much like to correspond with others who are experiencing polycythmeia along with hemocromatosis. I am not looking for medical advice just a friendly chat. As you probably figured out I live in Cleveland Ohio.
Hello there @ohio, welcome to the forum. I’m so sorry to read of you testing positive for the JAK2 gene mutation and subsequently Polycythaemia vera (PV) and haemochromatosis, not to mention needing to visit the ER. While I’ve not heard of the latter condition, I was diagnosed with a JAK2 gene mutation and Polycythaemia vera (PV) in 2023 so can relate to your concerns about that, phlebotomies, and hydroxyurea as those are my treatments.
We forum members can’t offer medical advice anyway, but I would point you towards the great Blood Cancer UK information about Polycythaemia vera (PV) which I go back to regularly: Polycythaemia vera (PV) | Blood Cancer UK
Engaging around the forum is a great way to find other friendly folks living with MPN (Myeloproliferative neoplasms) such as Polycythaemia vera (PV) and there are many of us here despite MPN (Myeloproliferative neoplasms) being considered rare. Using the search box at the top or Related Topics at the bottom should help you find others with Polycythaemia vera (PV) and/or haemochromatosis.
Another option might be to look for people more local to you, especially as testing, treatments and costs are different between the US and UK. I happen to also live in the US and find Blood Cancer United really helpful, they’re the US equivalent of BCUK: https://bloodcancerunited.org
Here’s a link to BCU conferences around the US which I’ve attended and found really informative and helpful for meeting others: https://bloodcancerunited.org/resources/educational-resources/blood-cancer-conferences
Hope that helps a little @ohio, do let us know how you get on.