Did you see the BBC report the other day about how antiretrovirals normally used to treat HIV had enabled a woman with Multiple Sclerosis to walk. The drugs had a dramatic effect:
Shana Pezaro, 36, from Hove, East Sussex, was given antiretroviral drugs after fearing she may have contracted HIV.
Within days, Miss Pezaro noticed an easing of her MS symptoms.
When a doctor saw her walking up stairs after years of using a wheelchair he set up a clinical trial.
Multiple sclerosis is an incurable condition that can lead to sight loss, pain, fatigue and disability. It affects around 100,000 people in the UK.
Miss Pezaro was a dancer and piano teacher before being diagnosed with MS at the age of 28. The condition affected her hands and feet and she used a wheelchair.
If you thought you recognised Shana, you’d have been right. She has made some fantastic speeches at Liberal Democrat Conferences outlining the practical effects of the welfare reforms enacted by the Coalition on people.
She made a video blog from the Birmingham Conference in 2011 which you can see here:
She did a written blog for the Brighton Conference the following year.
She wrote:
A debate on “Equal Citizenship – Supporting Independence for Sick and Disabled People” looked at the impact of the Welfare Reform Act.
You never know until the debate starts whether you will be called to speak or not… but I was, live on the BBC! I spoke about flaws with PIP, why lessons must be learned from the disastrously implemented Work Capability Assessments (WCA) and the impact of timelimiting contributory ESA.
At the end of the debate the party voted against further cuts to welfare which affect people with illnesses or disabilities. We now have to ensure the Lib Dem ministers stick to this, but I think they will…
Then Danni and I attended an event about carers in relation to the future of social care. I explained to Steve Webb MP (a minister in the Department for Work and Pensions) that there’s a barrier to me forming a long term relationship, because the reality is that if we lived together my partner would be means tested, and have to pay towards some or all of my care. I would become financially and physically dependent on them. He said he didn’t know what to say, and didn’t want to sound glib with any response.
Debates on social care so often focus on families with elderly relatives or disabled children. I wanted to keep the voice of the working age adult heard and bring issues that are not even considered into the public domain.
This is a very positive step forward for Shana and she has our very best wishes. More research is now taking place to determine whether this could help others.
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3 Comments
I am fed up with disabled people and their supporters always portraying themselves and being portrayed in certain parts of the media as victims. I am physically disabled and have been so since birth. But that has not stopped me from currently studying for a Postgraduate Research Degree at Keele University. My ambition once I have completed my studies is to start a career in academia.
That is surely the best way to deal with disability. To focus not on what you can’t do but rather on what you can do and have the potential to do. What matters is how you make use of what you can do to the best of your ability not wallow in self pity for the manner you became disabled in the first place.
Lovely that she’s been so involved in trying to bring light to the situations the disabled often find themselves in. I don’t live in t he UK, I live in Canada and it’s much the same. I get nothing from my country personally other than our public healthcare because my husband makes a decent wage. It’s not hard to understand why so many relationships end or never get to a certain point to begin with.
As for other disabled people finding issue with other disabled folks for having such issues, there are different levels and types of disabilities. It’s wonderful that since birth you have done very well Richard Whelan outside of having to develop different ways of doing things (possibly?) than those born without some sort of disability. For people with illnesses like MS things change regularly, for example one day using your arm may be like every other able bodied person and the next it can feel as thou it’s been wrapped in layers of tight plastic wrap followed by layers of batten and then concrete so sensation is greatly altered and it feels too heavy to even lift from at all to a very short period of time… it’s so hard to understand that even one sort of disability may be completely insensitive to another sort due to the lack of knowledge/understanding. It’s so very frustrating for others to get as well as those who go from one instant feeling fine to the next being robbed of what was just a moment ago their “normal.” So thank you to those who are compassionate enough to understand that there is an understandable reason why certain disabled (obviously or not, as many of us with MS, Lupus, Lyme etc. look fine on the outside till we’re in assistive devices etc.) human beings are considered “victims” to some degree.
I am so thankful I had 20 years of not being disabled before MS – but the 20 after that have been a hell of sorts. I am a very happy emotionally sound person really considering the trials and tribulations. It is extremely maddening to go from healthy and able bodied to seemingly healthy (as far as outsiders without scans can see) but feeling like your abilities are being robbed bit by bit. It’s a constant battle and for some better than others thankfully and sadly for others far worse, you know just straight shooting here – you don’t know till your in anothers shoes so to s peak so please please please step back, open your mind, and appreciate that your perception may not be right!! At least not for everyone!
The problem is that the word disability covers many different people with many different experiences. For a lot of people the disabled are people in wheelchairs and I can sympathise with Richard if he has been on the receiving end of irritating smiles of sympathy or total lack of sympathy as I have been when sometimes using a wheelchair. The Paralympics are a great example of physically disabled people fighting back. Unfortunately those of us who do not have obvious physical problems may be unable to fight back in this way. I have ME and Fibromyalgia and this affects my concentration, memory and emotional strength as well as my physical wellbeing but when I’ve got my make up on and nice clothes I’m often told how well I look. That is my way of fighting back and refusing to be labelled by my illness .Also contributing to LDV when I can gives me a great sense of achievement. I have a degree but studying for one with this illness would be beyond me now and I can no longer take an active part in politics. So let’s all join the Lib Dem fightback in whatever way we can and reserve judgement on others, if possible, until we understand where they’re coming from a little better.