MP Nicola Blackwood: diagnosed with ME at age 15, now has new diagnosis of Ehlers Danlos | Oxford Mail | 31 March 2015

From the Oxford Mail, 31 March 2015. Story by group news editor Keeley Rodgers.

MP NICOLA Blackwood has revealed she has been battling with a genetic condition for years but believes it has not affected her performance as a politician.

The Oxford West & Abingdon MP spoke to the Oxford Mail yesterday for the first time about being diagnosed with a genetic joint mobility syndrome called EhlersDanlos (EDS) in 2013.

The condition affects tissue in skin, ligaments, blood vessels and internal organs and bones.

It is known as an invisible illness because the symptoms are often not physically visible and about 57 per cent of patients wait more than 10 years for a diagnosis.

As a result of her EDS, she has since been diagnosed with postural tachycardia syndrome (PoTS), an an abnormality of the autonomic nervous system affecting blood pressure and heart rate.

But she has vowed to continue fighting her seat in the forthcoming General Election, having won by a majority of just 176 in 2010, and said she wants to “finish the job” she started.

Miss Blackwood said: “It’s been a long, rocky road to diagnosis but the NHS has been fantastic in helping me get on top of this.

“I’m lucky I don’t face lifethreatening complications like some EDS patients; in fact I’ve found that it’s been the simplest things like eating a high salt diet and pilates that have made the biggest difference.

“Now I can go into the election without any uncertainty, in control of my health, and trust that my constituents will see from my record how much I love representing them and my home constituency, and let me finish the job I’ve started.”

As a child, Miss Blackwood had asthma and was diagnosed with ME at the age of 15, becoming housebound by the time she was 17.

It interrupted her A-Levels and she had to be home-schooled.

But having been trained as a classical singer at Trinity College of Music from the age of 14, she went on to gain a first in music at St Anne’s College and an M.Phil in musicology from Emmanuel College, Cambridge.

She said she was able to get on top of the ME but in 2011 her health began deteriorating and in September 2013 she was diagnosed with EDS.

Despite receiving treatment, Miss Blackwood said she still had problems with her health and it was not until last August that she was diagnosed with the secondary condition PoTS.

She said she has altered her lifestyle to cope with the conditions including changes to her diet, doing pilates and physiotherapy, as well as taking medication.

She has to have 32 injections in her head every 10 to 12 weeks to help her migraines.

But she said it has not affected her job as an MP and added: “Even while I have been going through the process of getting diagnosed and learning how to manage the condition, I have been a marginal seat MP representing my constituents here in Oxford including major campaigns for A34 funding and flood defences…so I am even more confident now I have it under control.”

Oxford West & Abingdon is a key marginal seat and the Liberal Democrats are hoping to win it back this year with their candidate Layla Moran.

Miss Blackwood hoped her record “spoke for itself” and said: “I want to reassure my constituents that I have still been doing my job. If it hasn’t affected it in the last five years then it can only get better.

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