Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘BBC’

Chronic Lyme Disease – An Open Letter to the BBC

Dear BBC

Today you published the article ‘Matt Dawson: I had to have heart surgery after a tick bite’. At first I was thrilled, it is always uplifting to see articles highlighting this condition being shared by the mainstream media. However as I eagerly absorbed each sentence , I could feel my heart sinking further in my chest. In fact I’m pretty sure it dropped straight out of me and into the flat below under the weight of my disappointment! You could have taken this opportunity to really highlight the world wide issue when it comes to diagnosing and treating Lyme and Chronic Lyme Disease. The fact that you didn’t leap at this opportunity is beyond me. What happened to the BBC being at the forefront of reporting, challenging the establishment, pushing boundaries?

You even went as far as mentioning that if Lyme goes untreated it can go on to attack and cause ‘debilitating neurological problems’. This was your perfect opening to delve into the devastating condition that is Chronic Lyme; you could have examined how the tests for Lyme disease are extremely inaccurate and false negatives are a frequent occurrence; you could have investigated how NICE guidelines have left the few doctors who are up to date enough with the research in the area to believe in Chronic Lyme, unable to treat their patients without risking their medical licence. You could have mentioned how, if you are in the unfortunate situation of having to fundraise money to pay for your treatment, you are looking at a minimum of £10,000 for private medical bills and that there is no guarantee that you will be cured. You could have investigated how many people that are given the early treatment are actually, years later, successfully cured.

I was bitten by a tick at the age of 6, at the age of 22 I was diagnosed with Chronic Neurological Lyme Disease. Almost 3 years on and I am still fighting. Last year I was informed by neurologists that they were 99% certain I had MS, but then my MRI came back clean, when I brought up Lyme my case was swept under the carpet. Sufferers are abandoned, left to battle their own way through the system, made to feel like a fraud whilst their lives and their health fall apart. Unlike your report suggests, it’s not as easy as walking into a hospital and stating you have Lyme and hoping for treatment. It feels like a life sentence.

I am living that life sentence.

 

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Surreal Radio Experience

Today has been an experience to say the least. Whilst rushing around this morning attempting to persuade my non-cooperative arm into a jumper, I noticed I had a tweet from my local BBC radio station. I stood, gaping, one behaving arm in its sleeve, the other flailing through the air with a mind of its own. I’m not sure what I felt more, excited or nervous that I would ramble on faster than listeners could keep up with. Noticing this tweet a whole 40 mins beforehand wasn’t much prep time, but it wasn’t an opportunity I was going to turn down. As I discovered after a quick pre-interview chat, the show had decided to get in touch after reading my Cosmo article. The topic Disabled Dating, is one that many of you may be aware from my previous blog posts that I feel passionately about.

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It was fantastic to have the opportunity to discuss the stigma too often experienced because of disability. Whilst some people are absolutely fantastic, I’ve thrown my drink down my date before because I foolishly held it in my arm that spasmed; thankfully he laughed it off, others can be very closeminded and unwilling to consider the prospect of dating a disabled person. It was interesting to listen to George Dowell who was also on the segment and featured recently on The Undateables. Now don’t get me wrong, I haven’t changed my mind on the show. However it was thought-provoking listening to his experience.

If you fancy checking out the segment here is the link, the piece starts at 1h08, I come on at 1h16. http://www.bbc.co.uk/programmes/p03dsjr5

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