In the words of Gloria Gaynor ...

I am Rosamund Mary
I was born on the Isle of Man
I was adopted when I was 12 weeks old
I have a rare form of Von Willebrand's disease
I have less than 3% Von Willebrand's factor
I have less than 1% factor 8
I have injections to replace the clotting factor and stop bleeding
I learned to do them myself when I was 14
I started my periods when I was 13
I would bleed for 3 weeks out of 4 and then start all over again
I have taken hormone pills ever since then to keep the bleeding under control
I have always had acne on my chest from the hormone pills
I used to have horrendous period pain every month
I once had to stop my car and knock on a strangers door for help because I was blacking out from period pain
I now take hormones continuously because it's safer for me not to bleed
I was given Hepatitis C from contaminated NHS blood products
I was probably exposed with every injection I had in the 70's and early 80's
I had on average 1 injection a week then to control bleeds
I was not told by my specialist about my infection with Hepatitis C
I found out by accident at another hospital
I had a 12 month and then a 6 month course of treatment for the Hepatitis C
I had a biopsy before the 2nd course of treatment
I lost six pints of blood and nearly died after a bleed in my liver
I discovered just before I got married the Hepatitis C was no longer detectable in my blood
I have been ill with chronic fatigue ever since those treatments
I now have on average 2 injections a week of clotting factor to control bleeds
I have been exposed to vCJD
I have been unable to work since 2008
I have been unable to have children because of my ill health

I am what I am
I am just right
I am all this
I am me

Funny Blood the book - how to get yours ...

If you would like a copy of my mum's shiny new book Funny Blood - which is about adopting me as a baby, then finding out I had a severe bleeding disorder and the fun that ensued bringing me up - it costs £10.50 plus £2.50 postage (within the UK) if required. Multiple copies will require multiple postage though we may well do you a deal If you ask.

Funny Blood cannot be had from all good retailers I'm afraid as mum has self published. Until of course we hit the best seller list, which may take a while as we've only had 500 copies printed!

You can either send your cheque for the total amount, made out to Juliet Batten, to me:
35 Shrubbery Street,
Kidderminster,
DY10 2QZ
UK
or mum:
28 Franche Road,
Wolverley,
Kidderminster,
DY11 5TP
UK
If you do this please include your name, address and the number of copies you require.

Or if you want to send us a BACS payment please send us an email to roshasfunnyblood@gmail.com with your name, address and the number of copies you'd like and I'll send you the bank account details.

We will then post, or personally deliver if you're local enough, your book.

I will be putting it on Amazon but because mum's funded this herself I'd encourage you to buy direct from us because that way she gets a wee bit more from each book to help pay for the cost of producing it. We might just up the price a touch on Amazon to compensate, not sure yet. I'm dead proud of her I am, cos it's the first book she's ever written and she's been working on it for 8 years :D






Once you've read it we'd really appreciate your feedback.

One last thing - it is about me so I understand if that puts you right off ;)

Meeting with Anne Milton, Health Minister, October 24th

I recently attended a meeting with Anne Milton, Health Minister, on Monday October 24th at the Department of Health in London.  My MP, Mark Garnier, managed to get me on the list of attendees.  I was keen to attend to tell her personally how I felt about her announcement in January of this year which I believed failed the majority of the bleeding disorder community who had been affected by contaminated NHS blood products.

This was our introduction to Ms Milton and her associates:

Thank you very much for seeing us all today.  We would much prefer not to take up your time, but following your review and announcement regarding contaminated blood products in January 2011 we felt compelled to request this meeting, to urge you to re-visit the decisions made.  Specifically the one to retain the separation of the Hepatitis C infected community into two groups - stage 1 and 2 – when there is so much evidence that HCV is far more than liver disease.  People within the Stage 1 group are ill, but not through liver damage. 

When Andrew Lansley (MP) introduced the review findings he said that he hoped they would remove anomalies in the existing support system and that they could bring us some comfort, consolation and maybe even closure.  We believe that none of these objectives were met.  Your decision was that continuous financial support was only required by 20% of our infected community, leaving the majority still suffering, struggling and still fighting for help.  Maintaining defined stages of illness for Hepatitis C has increased not removed anomalies.  We do not think the levels of support offered are adequate but today we are requesting the immediate ending of the two tier system.

We believe that this is a fundamentally flawed decision and that an infected person deserves and should receive help because they were infected by NHS treatment, not if they meet highly specific, difficult to prove, levels of illness.  We do not believe the conditional and means tested Fund which is being offered is a step forward, rather it is an echo of the system criticised by this government and is vastly inadequate given the needs of those within the stage 1 group. 

Some of us belong to the various contaminated blood campaign groups.  I would like to stress that we are here today as individuals speaking only on behalf of ourselves but working for the benefit of all those who have been marginalised by your actions.  We hope to illustrate this by our own personal testimonies and the information included in our pack.

I will put the evidence we gave her on here, in post to follow...

 

Your Blood Supplement - Part 3

This is the third and final part of the piece I submitted to the Independent newspaper for their Your Blood Supplement.  Only a tiny bit was included in the final piece and you can see it here:

Your Blood Supplement

Your Blood - Part 3

I found out just before I went to university that I had contracted Hepatitis C through contaminated blood products.  Not really understanding what it meant at that stage I tried to forget about it and enjoy my university life.

I spent 6 weeks after university travelling around Chile with my best friend and though it was difficult to carry my clotting factor everywhere, when I had a massive nosebleed because of the altitude in the Andes it came in very handy.

Since then I have spent a lot of time dealing with the Hepatitis C, having two lots of treatment for it which made me very ill, and which I’m still suffering the after effects of 10 years later.  The treatment did eradicate the Hepatitis, for which I’m very grateful, but I have been left with long term chronic fatigue which has had a massive impact on my life – much more so than my bleeding disorder.  I’ve always said I can live well with a severe bleeding disorder, and I do day to day, but having a virus given to me and this taking away my ability to work and to live normally and have children is devastating.

I’m now 37 and bleeding-wise I am pretty stable.  I’m on high dose hormone pills to control my periods still, which suits me.  The alternatives for someone with my condition would be an endometrial ablation which has success in many cases, or a hysterectomy which used to be the treatment offered to young ladies with von Willebrands but today is generally a last resort.   I have frequent gum bleeds which can be apropos of nothing or which can be caused by a crisp, or an apple, or a banana even.  My nose bleeds are less frequent and I only have them when I have a cold or when I fly anywhere.  I still get occasional joint and muscle bleeds and bad bruising at the drop of a hat.  I inject myself anywhere from once a fortnight to twice a day, depending on the nature of my bleed.  My attitude is that I get on with things and don’t worry because my mum does that for me ;)

I am lucky in that my condition was diagnosed when I was very young and was well managed whilst I was growing up.  If I had not been diagnosed I’m sure that my life would have been extremely difficult and potentially hazardous.  The problem that we still face is that von Willebrand’s disease is not a recognised and well known condition, in the medical profession as well as the public – even though in its mild form it affects 1% of the population.  Many of those 1% are undiagnosed and may just think that easily bruising and nosebleeds run in their family.  In fact diagnosis can lead to careful long term monitoring, access to medications that can make life easier and proper management of any surgery that may be required.  The knowledge of those involved in the care of people with this condition is increasing all the time.

For the one in a million like me who have a severe form of the condition, nowadays the treatment is usually prophylactic – that means regular preventative injections of clotting factor.  This is instead of injections after the event and can prevent bleeding episodes or tone them down, and will prevent joint damage such as the arthritis I have in my ankles.  The off-putting thing about this at the moment is that our clotting factor is still manufactured from heat treated human blood products and therefore there is a level of risk as such.  Whilst haemophiliacs are mainly treated by manufactured, synthetic (recombinant) blood products, because there are smaller numbers of us von Willebrands the development of recombinant products for us has been slower.  I believe however we are getting there and for me this will be a great step forward in the next few years.  I also read with interest the recent research that is being done on gene therapy and the hope that one day this could provide a complete cure for a genetic blood condition like mine.

Your Blood Supplement - Part 2

This is the second part of the information I sent to the Independent for their Your Blood supplement.

It is being published tomorrow Friday 2 September - I'll put the link on here in due course.

Your Blood - Part 2

The next major challenge was, unsurprisingly, when my periods started.  This was a moment my mum had dreaded and it lived up to her expectations.  I bled for weeks each time with very little break in between periods.  I was treated often – by now the treatment was injections of clotting factor manufactured from many blood donations – and also spent a good deal of time as an in-patient having blood transfusions. My teenage years were interesting to say the least.

I was referred to an enthusiastic gynaecologist at the age of around 14 to see if my periods were so bad because of a gynae problem, but no, it was just my bleeding disorder.  He did however experiment with the hormone pill until we found a high enough dose to control the bleeding in some way that meant I didn’t have to go to hospital multiple times every period and could try and resume a normal teenage life.
 
My other issue during this time was that I had a number of spontaneous internal bleeds that required investigation and aggressive treatment and meant a good deal more time in hospital and off school.  These were bleeds that were not caused by anything specific and that I only knew about because of the extreme pain and swelling.  However I managed still to get both my GCSEs and my A levels and went off to university feeling really grown up.  

By this time I had taught myself how to self administer the injections.  This changed my life totally because we no longer needed to be within a safe distance of a hospital but I could take my treatment with me and go anywhere – I really felt like the world was my oyster!

To be continued ...

Your Blood Supplement

Recently I was asked to write about having von Willebrand's disorder for a supplement called Your Blood which is soon to come out with an issue of The Independent.  I was asked to write a paragraph but being me that was like trying to insert an elephant into a letter  box.

I am going to publish on my blog what I wrote, as it's a synopsis of my life with funny blood and I've not really put anything like that on here so far.  The supplement that is being published contains a mere snippet as they only had a tiny space to fill.  On here I'll break it down into sections. 

Your Blood - Part 1

When my mum and dad adopted me at the age of 6 weeks old in 1974, they thought they had been given a perfect little girl.  At the age of 6 months when mum was at the GPs and mentioned that I had a bruise, she expected the doctor to say, oh yes that’s quite normal.  She did not expect what actually happened next.

I was referred to the hospital to have blood tests done.  Mum sat on a stool at the hospital with me on her knee while they pricked my ear with a needle and watched it bleed.  After over an hour with me crying and mum worrying, they told her the fact it had not stopped bleeding was abnormal and that I would need more tests.

Mum was told by the Royal Manchester Children’s Hospital (RMCH) that her daughter had severe von Willebrand’s disease later that year.  The next few years were particularly tricky.  Learning to crawl, to walk and cutting then losing tiny teeth were all massive challenges.  Mum and dad decided early on not to wrap me in cotton wool – though they were tempted, and some padding fashioned from socks with their toes cut off, filled with foam rubber, were popped over my knees when I began to crawl.

As a severe bleeder every time I bumped, tripped over or cut myself we had the pleasure of a trip to the hospital over 20 miles away.  This could be many times a week.  When I bled it wasn’t necessarily heavy but it oozed for hours without stopping until I had treatment.  Treatment in the 70s consisted of cryo-precipitate, which had to be defrosted once we arrived at the hospital, and then loaded up into a 50ml syringe or into bags that were infused via one of my veins.  

I remember a lot of my childhood as being spent in hospital and the nurses became part of our family and I felt at home there.  I bruised very easily and had frequent nosebleeds and gum bleeds, all of which meant a trip to RMCH.  I also had problems with internal bleeding into my joints – these were very painful and more disruptive for me as I had to rest until they got better.  I also had to be pushed to school in a big blue stripy buggy which as a girl of 6 or 7 was not much fun.  Generally though I lived my life as normally as possible given the amount of time I was on my way to, or from, or at hospital.

To be continued...

I beg your pudding?

I used to be a good listener
Or at least I thought I was
You, dear friends, 
Might tell me different
And I wouldn't mind :)

I tried to be a good listener
Attentive, empathetic, sympathetic
Remembering details
Recalling them for future conversations
Enjoying sharing such a simple pleasure

Now ...
Now it's now so much fun
Not so rewarding
Not so participatory
The intention is still there
I intend to listen
To converse
To share and enjoy
But I'm disabled
Un able to
I'm limited
By my CFS

I can listen for only so long
Can focus for only so long
And so long ain't that long
Before I drift away
Before my mind wanders off
Like a distracted chicken
Pecking at the corners of my concentration

My eyes glaze
My ears glue
I can see you
But you're fuzzy at the edges
I can hear you
But I'm fuzzy in the head
It doesn't go in
Just bounces off the fuzz
Into nothingness and nowhere
I nod
I murmur agreement
You may not even notice

But the one thing I am aware of
Is that I'm gone
I'm not really with you
I'm inside
Looking out through fogged up glass
Desperately wanting to listen
To hear
To share
I wish I was taking it in
But I'm not there