Rare genetic disorder plagues southern Russian region
These days Aliaskhab Sayfuddinov seldom leaves his home, but he summoned all the strength he could muster to greet his guests from RT personally, in accordance to the local custom.
“I have no power in my limbs. If you touch me I’ll fall down. My muscles are completely dried up,” Sayfuddinov says.
The 36-year-old has suffered from muscular dystrophy for sixteen years. The first sign of any problem was when he felt a weakness in his muscles. It slowly worsened and led to partial paralysis.
Aliaskhab Sayfuddinov was unlucky – according to statistics, only one in two million men develop such a problem.
He lives in Rakhata, a village in the Southern Russian republic of Dagestan. Despite the entire republic having a population of just over three million, there are eight people suffering from muscular dystrophy in this tiny village alone, and more than two hundred in Dagestan as a whole.
All of the sufferers have been registered at a local medical center. Its head doctor Ayshat Akhlakova says the disease has a genetic origin. RT asked if anyone has ever recovered from it.
“It’s impossible to fully recover. Sooner or later they will become disabled,” Akhlakova says.
Alarmed at the situation Doctor traveled to the village of Rakhata to observe the patients. Having questioned them, she was told a man had settled in the area two centuries ago who could have been the bearer of the gene and therefore spread the disease.
Marriages within families are widespread in Dagestan. Doctors say it's one of the main reasons the illness has spread.
“Like everywhere else here we can marry our cousins. My wife is my relative, the same with my brother,” Sayfuddinov admits.
Local resident Magomedtagir Zagidov’s wife is also his distant relative, though he was warned by doctors in Moscow.
Another resident, Abbas Magomedov, has an extreme form of muscular dystrophy. He has spent two thirds of his life in a wheelchair. He learnt about his diagnosis when he was a student. In despair he immediately quit his university course.
“I have no hope for recovery for myself, but for the young, maybe they will invent an effective cure,” Magomedov says.
He feels no pain, Abbas says, because his limbs are totally paralyzed.
The problem here appears to be rooted two centuries in the past – now today's sufferers can only hope the technology of tomorrow will bring the breakthrough and relief they've been hoping for.