My page is now supported  by Jaspar Crawley and Friends with special thanks to Ed Martin Prud'homme for coming up with the idea of running the Madrid marathon.

 My story was as follows:

It was two years ago that I was finally diagnosed with LAM. For the previous five years I had been continuously getting more and more breathless. At first I put it down to being unfit, but as time passed and after the birth of my second child Nicole. I felt I needed some answers. I went to my GP who referred me to specialist consultant on the IOW. In a nutshell he told me I was a bit of a hypochondriac and the problems were probably down to stress. I remember going home in tears feeling that no one believed me.

 

Luckily Robert had private health cover from his work so we pushed for a second opinion.  Initially the specialists where a little uncertain as to what it might be. The CT scans from St Mary’s on the IOW where of such a poor quality I had to get them all redone. Fortunately I was referred to a recommended specialist in Southampton and it was she that finally made what has proved to be a correct diagnosis.

 

 I can still remember that day vividly. We had to take the two children with us to the meeting as we have no one locally who can look after them. I went in to see the doctor on my own and was told I should call Robert in. He came in with the two kids who proceeded to play up while the doctor was trying to break this catastrophic news to us. At the time it didn’t really sink in. I think the consultant actually found it more difficult than us to get through the meeting.

 

The next few days proved really challenging. I read up all I could and felt that in essence my world had come to an end. The prognosis wasn’t great and doing a self diagnosis on the internet threw up more questions than answers. I had extensive scarring of my lungs with cysts which where getting worse.  My efficiency had fallen to nearly 40% there was no known cure for the disease and I had two children under three. It all seemed so unfair. I had finally got my life on track and then this was thrown at me.

 

The first six months, proved really difficult. All the data I could get was not very helpful and there is a real shortage of any kind of support for such a disease. The counsellors I did speak to seemed unable to grasp the situation and to all intensive purposes they where pretty useless.

 

From the outside people don’t know that I have a problem. Even when you do tell them they seem in many cases, unable to grasp the seriousness of the situation. LAM is sometimes known as the hidden disease. It’s strange but if I said I had a rare form of cancer, I would probably get a completely different reaction.

 

From a day to day perspective the most difficult challenge is a mental one. Not knowing if you will see your kids grow up. Not really being able to plan for the future. Feeling different to other parents at the school gate.    

 

Fortunately after a couple of months, I was transferred to a new unit in Nottingham. It had just been set up to deal with LAM patients. The specialist Dr Simon Johnson and his wife have really embraced the whole subject. Simon has dedicated himself to the treatment of LAM while his wife Jan has driven the whole foundation of LAM Action in the UK.  It was from them that I actually received the first positive support. Simon although not able to give me good news could finally give me answers to some of the questions I had.

 

At this time a new drug trial was just finishing and it resulted in me being able to get a new medication called Rapamycin. It is felt this drug could slow the spread of the disease. There are only about 30 people in the country on the treatment and so far it seems to be having a beneficial effect. I have to go to Nottingham every four months for monitoring and so far so good. It’s by no means a fix.

 

The challenge now is two fold. Firstly research needs to be carried out and funded into LAM there are a number of studies going on world wide although most of the research seems to be based in the US under the direction of the LAM foundation.

 

Secondly a real education process needs to be rolled out. This will be both to educate medical professionals so they can diagnose the disease in the first place and it also needs to educate the wider public so they are actually are aware of this rare condition.

 

I am therefore trying to raise funds to help achieve both these goals.

 

Thank you for taking the time to read this – please watch the attached link to gain a better understanding of the subject.

Thanks for taking the time to visit my JustGiving page. For a better explanation about LAM please visit  the attached link on LAM below :

http://www.youtube.com/watch?v=1YVSKJOdch0&feature=plcp

 

 

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