"I waited years for them to understand what I was suffering from. Now I am fighting to get treatment"

June is the month of awareness of myasthenia gravis, a rare and serious disease that affects the lives of about 1,000 Israelis who suffer greatly from weakness and muscle fatigue.

One of those Israelis is 38-year-old Yuli Yagudin, who is fighting not to be deprived of the only treatment that helps her.

That's her story

In collaboration with the Maggie Association

10/07/2022

Sunday, 10 July 2022, 12:20

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Most of you have probably never heard the phrase from Mystania Gravis but for those who suffer from this rare disease - and also for their families - these are two words that cannot be forgotten.

Myasthenia gravis (or in Hebrew, muscle fatigue) is a severe and rare neuro-immunological disease, characterized by muscle weakness and can cause difficulty in swallowing and breathing, and in severe cases also life-threatening breathing difficulties.

In Israel, 800 to 1,000 patients with myasthenia gravis live, and they suffer from weakness and severe muscle fatigue.

Symptoms usually begin with drooping of the eyelids, especially in the evening, accompanied by double vision.

Often there is also weight loss, chewing fatigue and coughing after drinking.

In some cases there is also a change in speech tone, difficulty breathing while lying down and also a drooping of the head towards the end of the day.

This month marks the month of myasthenia gravis awareness in Israel and around the world (Photo: ShutterStock)

The combination of these symptoms, and living in the shadow of general weakness, make the lives of myasthenia gravis patients particularly challenging.

One of those Israelis suffering from this rare disease is 38-year-old Yuli Yagodin.

July has been living with the disease for over six years, and those have been very difficult years for her.

But the difficulty, if you ask her, was not only the physical suffering, but also the long way it went until she was diagnosed and given the right treatment for her.

For months she tortured various doctors, many of whom thought her symptoms were purely psychological.

Only after prolonged suffering was she referred for an EMG examination.

"After the test I received a diagnosis: 'You have myasthenia gravis.' "I had a worsening of the situation."

This story is very frustrating, but not unusual.

About 10% of patients with myasthenia gravis show resistance to conventional treatment, do not experience relief of symptoms even after drug treatment, and even experience severe and life-threatening seizures.

For those patients there is now a drug that reduces seizures and inhibits the deterioration of the disease.

Studies have demonstrated significant clinical efficacy of the drug, and yet - it did not enter the drug basket in 2022, and for July - this is a real cause for concern.

"In February 2021, I started treatment with a life-changing drug. Today, I hardly feel the symptoms of the disease, I behave properly without dependence and help and I even graduated through social security and vocational rehabilitation," says Yuli, "nine months ago I could not describe To myself that I can function so well, after years of suffering and dealing hard with the disease. "

In Israel, 800 to 1,000 patients with myasthenia gravis live, and they suffer from weakness and severe muscle fatigue (Photo: ShutterStock)

July receives the drug by infusion in the hospital, and is very careful not to miss any treatment because she feels her life depends on it.

But the joy that she has found a treatment that helps her live a full life is mixed with constant worry.

July says that the treatment is very expensive, and since he does not get into the medicine basket, every patient who needs it should submit an individual request to his HMO and hope that it will be approved.

Until recently, July had to seek such approval every 3 months, and each time such filled her with anxiety that the drug would be taken from her.

She recently received approval from the Maccabi HMO for a whole year, so she feels some relief, but she says her friends who are dealing with the disease are still struggling with bureaucracy to get the medicine they need.

In some cases, the desired approval is not obtained from the HMO, and then those patients experience a rapid deterioration in their condition.

Still, as someone who went through many years to find a way to feel better, she seeks to convey an unequivocal message: "Sometimes it takes a lot of patience to get to the right place and get to the right treatment and state of remission - but don't give up."

This month marks the month of myasthenia gravis awareness in Israel and around the world, but for July and other patients - awareness alone will not help, as real change is needed.

"Do not take away from us the right to live a normative life," she says. That, and certainly not to endanger our lives. "

The information does not constitute a substitute for medical advice and the attending physician should be consulted.

The information is provided as a public service under the auspices of Neoprem (Israel) 1996 Ltd.

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