A family is fighting the detention of a Libyan who came to Minnesota for treatment of a rare skin disease, saying being in federal custody will worsen his medically vulnerable condition.
Immigration and Customs Enforcement agents detained Hani Duglof, 32, last weekend and bound his legs in metal cuffs, even though he has a condition called epidermolysis bullosa (EB) that makes his skin and even his throat as fragile as paper, according to his brother. The friction from rubbing exacerbates the redness and wounds on his legs. He’s since been moved in shackles to a hospital.
The detention highlights a potential stumbling block in flooding Minnesota with immigration agents. The University of Minnesota and Mayo Clinic draw people from across the world for medical care of rare conditions. If some visiting patients end up in federal custody, they will be medically complex and difficult to detain safely.
“[Duglof] told me it’s crowded, that they were sitting on the floor and that everything is rough” in the detention facility, said his brother, Mohamed Duklef, who also has EB and traveled in 2014 to Minnesota because it is a world leader in treatment of the condition. “And he has a skin disease that is prone to infection.”
Duglof entered the U.S. legally, but his ultimate status has been uncertain for nearly a decade because federal officials have delayed action on his asylum request, according to his attorney. His family is trying to prevent his transfer to a detention facility in El Paso, Texas, and to obtain a bond so he can be released home to Woodbury to manage his condition while his status is resolved.
The brothers came from Libya in 2014 under visas to be screened for a bone-marrow transplant that was pioneered by the U and its Medical School dean, Dr. Jakub Tolar. Genetic testing found they didn’t have the type of disease that was eligible for the transplant, but they continued to receive medical care for their conditions. Duglof then filed the asylum request to avoid returning to Libya amid a prolonged civil war in that country.
“Because of rare diseases, we get a lot of these people,” said Erica Barnes, executive director of the Minnesota Rare Disease Advisory Council. Detentions could disrupt care for individuals, she said, as well as clinical trials and research that depend on international recruiting for rare diseases but also benefit Americans when they lead to better treatments.
An incurable genetic disorder, EB affects about 500,000 people worldwide. Minor friction can cause people with the condition to suffer skin tears and lusters, including in their mouths and throats. The wounds often lead to severe and sometimes fatal infections.