Thursday, 7 November 2013

Pulmonary Hypertension Awareness Month

November is the month that many charities choose to raise awareness and money. So it is no surprise that along with Movember, when men grow their mustaches for cancer charities and the BBC holds it's Children In Need night, the PH charities have also chosen this month to raise awareness.

So what is PAH (Pulmonary Arterial Hypertension)? Well those of you reading this blog because you have it or know someone who does could probably recite the description word for word. However for those who are a bit vague here is the official description as seen on the Pulmonary Hypertension Association website.

'Pulmonary hypertension (often shortened to PH) is a serious condition where the blood pressure in the pulmonary arteries is high. This causes progressive damage to the heart and lungs.'

• Pulmonary Hypertension or PH is where the pressure in the arteries in the lungs raises putting pressure on the heart. It reduces the amount of oxygen in the body causing severe breathlessness, dizziness, fainting, chest pain AND blue lips.
• It is very often misdiagnosed as Asthma. It is a rare, relatively unheard of, incurable disease affecting only about 4000 people in the UK.
• It can be controlled if it is diagnosed early enough but sadly half will die if they are not diagnosed within 2 years.

It sounds so benign doesn't it? Doesn't have quiet the same impact as 'cancer' or even 'pneumonia'. There is no hint of the devastation it causes or the fact that there is no cure. I admit that when I was first diagnosed I was so terrified that I might have cancer, I've never smoked but like most students spent hours in smoky pubs during my youth either drinking or working, that when they told me it was PH I thought 'is that all?' I was totally unaware of how it would slowly erode every aspect of my life. Being told that I was unlikely to make my fiftieth birthday, I was forty seven at the time, was a huge wake up call. Slowly the PH did it's worse. Exercise was the first to go. I was very active, swimming, running, weights, I admit to being a bit of a gym bunny. I was told to stop lifting weights immediately as it raises your internal blood pressure and mine was high enough. Gradually swimming and running went to the wall as my breathing became more restricted. Then the walking began to suffer. I was fine on the flat but the mere hint of a slope and I puffed and wheezed like an old steam engine. Now I can't even make to to the post box at the end of the road. In short my PH is now so severe the only thing that will save me is a transplant.

Although my old life was being steadily taken from me a new one, and maybe even a better one, started to replace it. I became a campaigner. I went to parliament to argue for better recognition and funding for PH with MP's. I took on NICE when they threatened to stop paying for our much needed medications. I took on the airlines charging ridiculous amounts to allow us to have oxygen on flights. And I appeared in local newspapers and on local radio. Of course it wasn't just me. Lots of us took part in these campaigns and I'm pleased to say for the most part we were successful.

Most of this I've documented before in past blogs. However what a lot of my friends and family will not know is that I am also a world record holder, me and thousands of others that is. In 2010 we launched our biggest campaign ever. One of the main symptoms of PH is dark blue lips due to lack of oxygen in the blood. We took this negative and turned it into a positive by setting the record for the most individual blue lip prints ever collected. The attempt involved smearing your lips with blue lipstick, kissing a piece of paper and signing it then sending it in to be counted, verified and added to the growing pile. Some of us also sent pictures of ourselves 'Puckering Up 4 PH'. I've included mine here, I know it's ghastly but it was for a good cause so don't have nightmares.

The official count took place on Friday 18th February 2011 at a school in Bury. It was organised by one of the teachers there, who had lost her sister to PH. Officials from Guinness World records were also in attendance, as was Dr Chris Steele from ‘This Morning’ who is a patron of PHA UK. I am delighted to announce that we collected 54,949 blue lip prints worldwide, which broke the old lip print record by 15,000. A wonderful achievement!!! Nearly 55,000 more people are now aware of PH!!. Not surprising then that the symbol for this month's awareness campaign is a pair of blue/purple lips.

So strangely having PH has enhanced my life. Without it I'd never be part of a world record. I'd never have attended the houses of Parliament except as another tourist. I'd never have had the courage to speak out for something I really believed in. And most of all I would never have become friends with some truly wonderful and inspirational people. PH has changed my life and there is no doubt that I'm not the person I once was. I'm kinder, more patient, I value my family and friends more and I've gained an inner strength I'd never have thought possible. Yes I wish I didn't have PH, I wish I'd never heard of it truth be told but in the end it has made me who I am now and that is a better person.

For more information on PH and to see how you can raise awareness, money or just support those with PH visit the PHA website. Link below.

My thanks to Jane Taylor for the additional information regarding the definition of PH and for the facts on the World Record both shamelessly copied from her post. Thanks again Jane.