Rare disease day: Basingstoke woman with rare disease joins campaign

Rare disease patients and charities are collaborating with Sanofi, a pharmaceutical industry company, to sing for the This is Rare campaign, which puts the voices of the rare disease community centre stage.

Taking inspiration from the empowerment song This is Me from The Greatest Showman, patients, charities and health professionals came together to record songs for the campaign at Abbey Road Studios and share their experiences through songs under the guidance of world-famous vocal coaches and presenters, Carrie and David Grant MBEs. 

The campaign was launched on Tuesday, February 28, on Rare Disease Day.

Among the collaborators is Hannah-Lou Blackall, a 36-year-old woman from Basingstoke who is diagnosed with Thrombotic Thrombocytopenic Purpura (TTP).

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It is a very rare and potentially life-threatening autoimmune (normally) condition, the cause of which is unknown.

It occurs when the ADAMTS13 enzyme does not function as it should, leading to small blood clots in the blood vessels, low platelet counts and destruction of the red blood cells.

The symptoms are variable and hard to pin down. 

Hannah-Lou experienced bruise-like blotches caused by bleeding under the skin, headache and heavy menstrual bleeding before becoming seriously ill and eventually requiring an emergency transfer from Basingstoke hospital, to the Intensive Care Unit of a specialist centre in London in November 2020.

The long-term effects of TTP include neurological effects – she finds her concentration and word-finding impaired.

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She will also always need regular monitoring against the possibility of relapse.

Although Hannah-Lou has not yet got back into work, she enjoys singing, often in church, creative writing and has a busy social life while managing the fatigue which seems to be a continuing consequence of TTP.

She also has an assistance dog called Higgins who joined the choir at Abbey Road. 

Hannah-Lou with Carrie and David Grant (Image: Newsquest)

One in 17 people will be affected by a rare disease at some point in their lives. This amounts to 3.5 million people in the UK.

The This is Rare campaign aims to raise awareness of the individuality of rare diseases but also the common impact.

It seeks to highlight the need for greater recognition, timely diagnosis and appropriate and equitable access to care. According to the campaign, at present, people with a rare disease in the UK might see five different doctors and be misdiagnosed three times before they get the diagnosis they need.