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There are many challenges to living with a myelproliferative neoplasm (MPN). For some it may be quite straight forward but for some it may bring feelings of being isolated, lonely, confused and frustrated.

Here are a selection of life stories from MPN patients from various backgrounds and ages. We always welcome stories which share MPN experiences or encourage other patients or their families who are at different parts of their life journey of living with a chronic disease like MPN. If you have a story to share please email info@mpnvoice.org.uk.

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VivL

October 25, 2022

VivL aged 69 Despite months of severe headaches which I went to my GP about, nothing was done until I had a transient ischaemic attack accompanied with numbness and tingling …

Uschi K-R

October 25, 2022

Uschi K-R aged 69 I was born in Germany but have been living in the UK for the last 45 years, where I raised my family and worked as a…

Suzie W

October 25, 2022

Suzie W, 46 years old. I was diagnosed with ET in 2012 while serving in the RAF. Although my platelets remain at around 1200, I am lucky to be classed…

Steven S

October 25, 2022

Steven S Aged 76 Managing my MPN against a plethora of medical issues I was diagnosed with ET about 30 years ago. This progressed to PV about eight years ago.…

Melanie C

October 25, 2022

Melanie C aged 55. In March 2020 I had difficulty breathing and was admitted twice to hospital within four days. This was likely the result of a deep vein thrombosis,…

Mark R

October 25, 2022

Mark R – aged 50 Using the bucket of energy wisely. I was diagnosed with polycythaemia rubra vera in 1999, which progressed to myelofibrosis in 2019. This was confirmed by…

Lisa H

October 24, 2022

Lisa H aged 55 In 1994 I visited my GP as I was very lethargic and experiencing strange transient flushing episodes even after drinking just a glass of wine. My…

Kimberley R

October 24, 2022

Kimberley R age 37 In 2010, at the age 26, following the birth of my son I suffered a major deep vein thrombosis (DVT) and multiple pulmonary embolisms – clots…

Katy B

October 24, 2022

Katy B, aged 43 Taking charge. When I was first diagnosed, I had been feeling run down for a long time. I felt constantly tired, and initially I was told…

Kathie

October 20, 2022

Kathie – aged 45 I enjoy a very fulfilling career. I am also a daughter, a partner, and the mother of three beautiful children, ages 12, 10 and seven. I…

Juliet B

October 19, 2022

Juliet B, 67 years old. My MPN was diagnosed in 2020 through the results of blood tests. My GP had seen that my platelet levels were very high, and combined…

Joan S

October 19, 2022

Joan S aged 79 In 2018 my GP informed me that I had persistent anaemia. She suspected that I had a slow internal bleed and referred me to a gastroenterologist.…

Jillian D

October 19, 2022

Jillian D aged 59 I was diagnosed at an appointment following a minor operation. The follow-up team told me they had written to my GP three times about their concerns…

Frances D

October 19, 2022

Frances D, 85 years old. I was diagnosed with essential thrombocythaemia (ET) in March 2018, after moving to a new GP who spotted my high platelets, and referred me to…

Dorothy B

October 19, 2022

Dorothy B, aged 75 “We can deal with this.” I was diagnosed with PV in early July 2020 and although I was a bit shocked at the news, I was…

Colin S

October 19, 2022

Colin S – aged 67 In 2003 a routine military blood test indicated a haematocrit over 50 which led to an appointment with a haematology consultant for investigation. The initial…

Charlie C

October 19, 2022

Charlie C 26 years old I have Essential Thrombocythaemia (ET), which was officially diagnosed in December 2020, one month after I presented with symptoms. Being a doctor myself has made…

Brenda F

October 18, 2022

Brenda F – aged 68 My MPN was discovered through a bone marrow check, as my white cells had been increasing. I was shocked when I was first diagnosed, but…

Alisia

October 17, 2022

Alisia O – aged 60 I’m a wife and mother of two beautiful girls. I was diagnosed in 2008 with essential thrombocythaemia. Emotions of diagnosis Apart from a number of…

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We need your help – will you share your story on our website? We are currently updating and reviewing the information on our website. The real stories shared by the…

Dick M

January 4, 2016

Dick M, age 77 At the age of 69 I appeared to be very fit and active, cycling, hill and dog walking and managing a half-acre garden. However, one morning…

Anthony S

January 4, 2016

I was diagnosed with ET in August 2000, aged 30. My only symptom at that time was priapism; (wikipedia.org/wiki/Priapism) originally lasting an hour or so and occurring three months apart…

Jeffrey W

January 4, 2016

My name is Jeffrey and I was diagnosed with Primary Polycythaemia several years ago. (I can’t actually remember how many) having been called back to my doctor following blood tests…

Eric A

January 4, 2016

In June 2011 the haematology consultant at a London hospital suspected a myeloproliferative disorder because my platelet count had shot up from its normal range to 937 and he asked…

Jennie B

January 4, 2016

Jennie Barnes aged 25 has lived with essential thrombocythaemia (ET) since she was diagnosed at the age of 13. In November 2013 at a routine consultation she was told that…

Annette M

January 4, 2016

My name is Annette and I am 62 year old. Fourteen years ago I was feeling ever so tired so my GP decided to have blood tests done for this…

Catherine O

January 4, 2016

ET was discovered when I went for a routine blood test and a cholesterol check. The results showed that I had high blood platelets. I didn’t really know what blood…

Chris H

January 4, 2016

Hi, I’m Chris, 58 years old reasonably fit as I like to run and kayak, and the am the fittest of my friends and family in my generation. In April…

Michelle R

January 4, 2016

October 2013 I was the fittest I had ever been, 10K’s under my belt along with a half marathon and the GreatSouth Run. I felt a little poorly the morning…

Mark C

January 4, 2016

I was diagnosed with polycythaemia ruba vera and essential thrombocythaemia five years ago. This was due to a blood test for something totally different and a complete fluke. A number…

Louise S

December 9, 2015

Diagnosed in 2009 at the age of 35, Louise, now 40 shares: I will never forget the day that finally a GP had said the word “polycythaemia” and I asked…

Gloria

December 9, 2015

Hello my name is Gloria After a routine blood test in February 2010 I was diagnosed with essential thrombocythaemia. I was 68 Years old. My platelet count was 700 and…

Steve B

December 9, 2015

Steve was diagnosed at 42 and shares: I’m now 46 years old and was diagnosed with polycythaemia rubra vera (prv) just over 4 years ago. People used to say to…

Will

December 9, 2015

Uncertain about the future Will, a 62 year old self-employed architect lives in Somerset. I was diagnosed with PV in 2010 when a swelling came up on my arm which…

Faye

December 9, 2015

I am 40 with two small children. I was diagnosed in autumn 2013 after a portal vein thrombosis, which in itself was scary. After referral to a haematologist and a…

Jane

December 9, 2015

I was diagnosed aged 44 with essential thrombocythaemia (ET), 20 years ago. In those “dinosaur days” the internet information was just for the privileged few who had access to medical…

Liz H

December 9, 2015

I would like to share my story. About 8 years ago, while on holiday in Spain, I started to have daily headaches which I blamed on the stress of being…

Brian

December 9, 2015

Brian 74 writes on 20th February 2014 I was due to have the first of two operations on my knees. Accordingly, I had a pre-op examination three weeks before. On the…

Pamela

December 9, 2015

Hi my name is Pamela. I am 55 years old and I live in Western Australia. I was diagnosed at the age of 47 after a high platelet level was…

Adrian

December 9, 2015

I was diagnosed with myelofibrosis (MF) in 2011. I was fortunate to have been diagnosed early because I competed in many difficult ultra distance mountain bike races. I consider the…

Helen

December 9, 2015

My name is Helen and I was originally diagnosed with ET in October 1991 when I was 39 years old. It had been a fairly hot summer and I was…

Gina

November 17, 2015

My name is Gina and I have essential thrombocythaemia (ET). I am one of the rare people to be diagnosed with a myeloproliferative neoplasm (MPN) as a child: I was…

Emily B

I was diagnosed with Myelofibrosis when I was 33 years old, just six weeks after the birth of my eldest daughter who is now 14. A few weeks after the…

Mai R

I am now 65 and was diagnosed with PV in 2005 when I was 57. I had a Well Woman blood test which showed my red blood count was close…

Sally R

Sally writes I had no serious illness before PV. I was asthmatic but well controlled with Milflonil and it never stopped my very active life, breeding, competing at top level…

Sylvia R

Michael, my husband, Aged 66 was diagnosed with Myelofibrosis in March 2014 He had a Bells Palsy episode in 2012 and was admitted to hospital as we thought it was…

Sally T

My name is Sally and my MPN story began in April 2012 when a visit to my GP resulted in a referral to the haemotology department at my local hospital…

Chris A

I am a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET. I started in the rubber industry in 1963 after…

Cecilia J

Having previously lived in Spain, I am now resident in a beautiful part of France, with views of the Pyrenees in the Ariege. We had just signed for the house,…

Marley A

At 59 I was looking forward to retirement and all I was going to do. It was summer term at the college where I worked and we were busy doing…

Jon M

I’m a 53 year old bloke from North London and I was diagnosed with essential thrombocythaemia about 16 years ago. Under the care of my consultant, I’ve been taking interferon alpha…

Sally P

My name is Sally, I am 71 years of age and I have ET. I was diagnosed in 2008 following a routine blood test which showed an abnormally high platelet…

Janet W

I was flabbergasted when, in December 2013, I was diagnosed with essential thrombocythaemia. I had thought that I was perfectly healthy – in fact I had visited my doctor for…

Sharon L

Twelve years ago if you had asked me what E.T stood for I probably, like many others would have replied “A funny alien on a bicycle!” Like so many sufferers…

David L

I was first diagnosed with polycythemia vera when I was 46. I am now 74.The discovery of the disease was quite by accident, although I had not been feeling very…

Brenda B

2011 was nearly at an end and my thoughts were turning to Christmas shopping. I was considering just sending money or vouchers as the thought of Christmas shopping filled me…