Nusrit Shaheen Nusrit Shaheen Nusrit "Nelly" Shaheen (born 1984) is the longest-living survivor of harlequin-type ichthyosis in the United Kingdom and one of the longest-living in the world. She lives in Coventry, and was one of nine children. Four of her siblings had harlequin, but died at a young age. Many survivors of harlequin are predicted to die before or during their teens, but Nelly is now in her 30s and contributing to living a long, healthy and rewarding life. Nelly's medical condition, harlequin-type ichthyosis, is a seriously rare genetic condition which means her skin forms up to 10x more than the
Adult polyglucosan body disease same mutations is called glycogen storage disease type IV. Adult polyglucosan body disease is a condition that affects the nervous system. People with this condition have problems walking due to reduced sensation in their legs (peripheral neuropathy) and progressive muscle weakness and stiffness (spasticity). Damage to the nerves that control bladder function, a condition called neurogenic bladder, causes affected individuals to have progressive difficulty controlling the flow of urine. About half of people with adult polyglucosan body disease experience a decline in intellectual function (dementia). Most people with the condition first go to the doctor due to the bladder issues.