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Cure hope for patients suffering from the same genetic disease that destroyed Keir Starmer’s mother’s life

Patients suffering from the same genetic disease that devastated Sir Keir Starmer’s mother’s life now have hope of a cure, thanks to new breakthrough drugs.

The leader of the Labor Party spoke on BBC Radio 4’s Desert Island Discs last week about the disease she had contracted, Still’s disease.

As a young teenager, he was once told that she could die in a bout of severe symptoms and had the prospect of telling his siblings the terrible news.

In fact, Sir Keir’s mother Josephine survived. Although eventually wheelchair-bound and unable to speak, she lived long enough to see him knighted in 2014 and passed away the following year.

In an earlier interview, the 58-year-old former attorney – who once led a successful retrial against Stephen Lawrence’s killers – said: could happen to her. In the end, things were very difficult.

Sir Keir Starmer, pictured during the Prime Minister's questions on November 11, spoke on BBC Radio 4's Desert Island Discs last week in a touching way about his mother's illness, Still's disease.

Sir Keir Starmer, pictured during the Prime Minister’s questions on November 11, spoke on BBC Radio 4’s Desert Island Discs last week in a touching way about his mother’s illness, Still’s disease.

For the last ten years of her life, Mommy couldn’t move or speak. One of the great sorrows for me was that this meant she could never talk to my children, who were born after she lost her voice. ‘

What makes Josephine’s story even more poignant is that treatment for Still’s disease has progressed beyond recognition in the five years since her death.

“Newer treatments have changed the outlook for most patients,” said Rob Moots, a professor of rheumatology at Edge Hill University in Lancashire.

“A patient in her early forties with two young children and was unable to walk or get out of bed when she first came to me.

“Now that she has the right treatment, she’s back to work and can pick up her children from school.”

Today, an army of new drugs can slow down the immune system response that causes Still’s painful symptoms. They include excruciating pain in the limbs, rash, fever, and fatigue.

It means that 80 percent of patients can now return to work and play an active role in caring for their children or grandchildren.

Still’s disease is a rare genetic condition that affects about 800 Britons. It’s a form of arthritis that is triggered when the immune system goes haywire, often as an exaggerated response to a mild infection, and causes widespread inflammation affecting joints and tissues.

Because the inflammation affects the body’s energy-producing mechanisms, high temperatures of up to 40C and severe exhaustion are common.

Previously, the main treatment consisted of high doses of steroids – drugs that dampen inflammation. But the long-term effects of this treatment can be worse than the disease itself, causing extreme weight gain, thinning bones, and an increased risk of throat infections that affect speech.

As the inflammation affects the body's energy-producing mechanisms, high temperatures of up to 40C and severe exhaustion are common (photo file)

As the inflammation affects the body's energy-producing mechanisms, high temperatures of up to 40C and severe exhaustion are common (photo file)

As the inflammation affects the body’s energy-producing mechanisms, high temperatures up to 40 ° C and severe exhaustion are common (photo file)

One patient, Clare Asher, 47, from Peterborough, who was prescribed the drugs to treat Still’s disease, suffered from double vision and the facial weight gain was so severe that it disfigured her.

“My face was so stretched that I couldn’t smile,” says the teacher, who was diagnosed with the condition in 2018 after a period of severe vomiting, extreme exhaustion and swelling in her finger joints.

Other standard treatments to address inflammation, such as a drug called methotrexate, also caused side effects, including severe dizziness.

Earlier this year, Clare decided to discontinue all medication and says her symptoms are remote.

But doctors say if her condition worsens, they can now offer new, safer, and more effective drugs.

Two of them, anakinra and tocilizumab, are injected every two weeks and target the two proteins in the body that are responsible for malfunctioning of the immune system.

Additional new research suggests that a class of arthritis drugs called JAK inhibitors, which block enzymes that put the immune system into overdrive, are also very effective.

Half of the patients who take the inhibitor pills every day for a year will see a complete remission of their condition. The rest are experiencing a significant reduction in symptoms, according to a recent study published in the Annals Of Rheumatic Diseases. Although the pills are not licensed in the UK, doctors say they can still be prescribed by GPs as they are already used to treat other diseases such as rheumatoid arthritis and ulcerative colitis.

In total, eight out of ten Still patients have been effectively cured.

Dr. Sinisa Savic, clinical immunology and allergy advisor at St. James’s University Hospital in Leeds, and one of the UK’s leading experts on Still’s disease, says: “New drugs have made a huge difference to many patients. Some go into complete remission after a few treatments.

“In the past there were probably many in and out of the hospital, as was Sir Keir Starmer’s mother.”

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