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Abu Dhabi, UAEWednesday 19 December 2018

UAE Helping Hands: Syrian family desperate to find money for son's multiple sclerosis drugs

With no health insurance for medication, 38-year-old Nedal's body has been ravaged by the degenerative disease

Nedal's condition has deteriorated in the two years he has been unable to afford medication. Pawan Singh / The National
Nedal's condition has deteriorated in the two years he has been unable to afford medication. Pawan Singh / The National

Nedal Haboubat was once a healthy, active man. Today, because of a neurological disease, he is unable to move or walk.

Five years ago, the Syrian, 38, was found to have multiple sclerosis, a disabling disease of the brain and spinal cord. Mr Haboubat has no health insurance and his medication costs Dh108,000 a year, which his family cannot afford.

“Do you have any idea how it is like watching your son become this way – from a strong young man to being unable to move so much as a finger,” says his mother, Sahar Al Tinawi, 58.

“Do you know that he falls all the time?” she asks through tears. “Did he tell you that he now can’t even bathe on his own? How do you expect a mother to feel when she sees her son in this way?

“My son will not tell you these things because he is very quiet and doesn’t like to complain. But he is suffering and I suffer seeing him this way. I have moved into his bedroom. If he needs to get out of bed, he needs support.”

Multiple sclerosis affects patients differently and the symptoms vary. They include loss of balance, numbness or weakness in one or more limbs.

Mr Haboubat’s legs and arms are weak. Other symptoms include slurred speech, fatigue, dizziness and problems with bowel and bladder function.

“I spend my entire day on the couch. I haven’t left the house in months. I can’t even walk a few steps without being extremely exhausted,” says Mr Haboubat, who had to leave his job as a salesman when his condition deteriorated.

“I used to be able to work and I used the money I earned to pay for my medication but now I physically can’t work or do anything.”

He was recently diagnosed with primary progressive MS,which means that his condition will gradually worsen over time.

Without medication his symptoms may become more frequent and more severe. It has been two years since his last dose.

“I want to save my son but I don’t know how. The medicine he needs is too expensive,” his mother says.

When the disease was first diagnosed in 2013 a pharmaceutical company offered him free medication for a year. Now that he has primary progressive MS he needs a different medicine, called Ocrevus.

“We all live in my youngest son’s apartment. He is the only one who is employed and the little money he earns goes to rent and to provide for us and his own children,” Ms Al Tinawi says.

“I pray for my son day and night and to have the means to get him the medicine he needs. I pray that no mother goes through the pain of seeing her children in this way.”

Hisham Al Zahrani, manager of zakat and social services at Dar Al Ber Society, says: “Multiple sclerosis is a debilitating and crippling disease. Without health insurance, the medication is impossible for any person to afford.”

A 2015 study found that the cost of first-generation, disease-modifying medications for MS increased from between $8,000 and $11,000 a year in the 1990s to about $60,000 a year now. Newer disease-modifying drugs can cost even more.

salnuwais@thenational.ae

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