KARACHI: Sultana rues the day she formed a familial alliance with her husband. At that time, she had no way of knowing what it meant to be the wife of a man suffering from a rare genetic disorder called Huntington’s chorea.
Now, she knows. All too well.
“My husband, Amir, told me after one year of marriage that a genetic disorder runs in his family. I didn’t know that his mental and physical health will deteriorate so fast,” she says quietly.
Sultana, the mother of three children, is just 28 years old. She lives with her husband and in-laws, some of whom also suffer Huntington’s.
“I wish my husband and I were educated enough to seek a doctor’s opinion before tying the knot,” she says repentantly. “I will never marry off my sons. I don’t want to destroy the lives of other girls.”
No light at the end of the tunnel
“Huntington’s is incurable,” says Dr Aziz Sonawalla, a consultant neurologist at the Aga Khan Hospital. “There is no genetic testing facility in Pakistan and even its diagnosis is difficult because it’s not a common disease, like paralysis or Parkinson’s.”
Sultana is slowly coming to terms with this.