Hello There!

Welcome to Living With Myelo!

If you have found your way here it is possibly because you are looking for some support or perhaps you just want to feel like you are not alone.

I created this blog for that very reason. My husband was diagnosed with Myelofibrosis (a rare blood cancer) in 2009 and has managed his condition for six years. A young man of 36 he was told he had 8 to 10 years to live. Devastating news for a newly married couple especially since this is a condition that usually hits people in the later years of their life. We were left confused, traumatised and feeling completely isolated.

As many of you know it isn’t just the patient who suffers in situations like these. Family and friends are also deeply affected. They are often the ones who it hits the worst as nobody is really looking out for them.

Having lived with this disease alone for so many years we now feel it is time to speak out. Give it a voice and support those who like us sometimes feel like they are floating alone in the sea, bewildered by what is happening. We also hope to have a laugh along the way too – when life gives you lemons and all that!

We hope you enjoy our blog and we also hope that you feel compelled to share your stories with us too. You can contact us by leaving a comment on one of our pages or filling out a contact form.  

Jude x

P.s I also post many of my blogs on The Huffington Post UK. Check out my posts here.

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When The Sponge Finger Chooses You

2 thoughts on “Hello There!

  1. I was diagnosed with MF 25 years ago. For the first 20 years it was not really part of my life (except for the doctors telling me I had three years to live in 1998). Starting five years ago my counts started to fall and the fatigue worsened. I started on Jakafi which gave me tremendous relief until after about 18 months I developed thrombocytopenia and ultimately had to stop the jakafi. I am currently on the persist II study and taking pacritinib which helps but nearly as well as the Jakafi. It is not time to the BMT
    I feel the worse for my family who has seen me go from a vibrant active person to someone with no energy and does not do much anymore. Hopefully the BMT will make the difference if I survive.

    For those of you close to 65, please be aware that the transplant is not covered by medicare and that you should do the transplant while you still have traditional medical coverage.

    Liked by 1 person

  2. Thanks for your comments Geoff. It’s amazing that you were able to live relatively symptom free for so long. I think the life expectancy rates the doctors predict are often wrong. I am so sorry for what you are going through now and hope the BMT is successful for you. Thinking of you. x

    Liked by 1 person

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