I have MF and wondered if anyone has had the opportunity to help with research into this illness.

I would like to assist by giving details of my life, past health problems and work history to try and find out why I have this illness now and what causes ET to turn into MF. Does anyone know of an institution who would be interested?

[westlieght]

Would be intresting as i have the same post ET-MF but have not heard on any will ask may hemo specialist .

[Hidden in reply to westlieght]

Thank you for your reply. I look forward to hearing the reply your hematologist gives.

[tinaj]

It is a good question. I haven't heard of anything either.

[Hidden in reply to tinaj]

Thank you for replying so promptly.

[JediReject]

Hi Enquirer . Ive wondered about this after being diagnosed with 'Idiopathic' -of unknown cause - MF. i wouldnt be surprised if an institution like the Mayo Clinic in the US collects life history data to see if there are any apparent links but I dont know of anything in the UK. Ive never been asked much about my life prior to MF but I was a painter and exposed to all the chemical agents that go with the job. Also my sister told me that our mum had told her that when she was expecting me she had numerous xrays because of the way i was positioned in her womb something that ultrasound now does. So I am left wondering if the cause could be determined and data collection would be a good start, maybe not for us but perhaps for those who go on to develop it in the future. Cheers

[Hidden in reply to JediReject]

Thank you for that reply. Similarly I have never been questioned about my past lifestyle/work history. It would seem helpful to gather information such as this as maybe in the future it would help to pinpoint how or where this illness starts. I know of someone who died approx. 20 years ago of MF and his job was fitting sprinkler systems in a chemical factory. Later he went on to be a car mechanic. No idea if either of these jobs had a bearing on his illness. When my mother had leukemia a researcher took down her life history and those of her siblings.

[basilmaaeo in reply to Hidden]

I was interested to read your post, regarding your mother having Leukemia. My mother passed away from Leukemia 4 yrs ago ( a link maybe??). She had been diagnosed with a blood disorder 5 years previously (not MPD). I was diagnosed with MF in March this year, after undergoing routine blood tests for a blood infection in my leg last Sept. I am told I am young to be diagnosed (52), and as such my prognosis is good - unfortunatly doesnt stop the debilitating fatigue!! I am on low dose apsirin and Hydrocarbamide.

Also in the 70s i spent a year hairdressing, but had to give it up as I was very allergic to the chemicals... Would be interesting to read any such study as they develop.

[Mazcd Partner MPNVoice]

There is currently an epidemiology study being undertaken at Belfast and Southampton Hospitals looking into the causes of MPDs, more information is available in the current edition of MPDlife, our newsletter, mpdvoice.org.uk/wp-content/..., if you live in either Belfast or Southampton you may be able to sign up for it. Maz.

[Hidden in reply to Mazcd]

Thank you for that informative reply. Unfortunately Belfast or Southampton are not my area, but I will still look this up in the newsletter.

[beetle]

23andMe.com were looking for 1000 people with MPNs to do a free genetic profile on to further research into these conditions. They just asked for a donation of saliva in a tube that they send out. I do not know if they have reached their 1000 target yet - they were getting close to it but it may well be worth contacting them. I think some of the results they give should perhaps be treated with a grain of salt but anything that can help with MPN research was worth it in my book

[Hidden in reply to beetle]

Thank you for directing me to this website. Will have a read. It seems that there is not an enormous amount of info out there, but perhaps I am looking in the wrong place.

[beetle in reply to Hidden]

Try 23andme.com/mpn. They may already have reached their 1000 target but that should get you the info you need if not