LONG ISLAND, NEW YORK – 8 May, 2017 – Copiague resident Kristyn Millan found out last year that she suffers from Loeys-Dietz Syndrome (LDS), a rare genetic connective tissue disorder identified in 2005 that affects all body systems and causes aortic aneurysms and dissections, even in children. In many situations, it has proven fatal.
Other symptoms of LDS include joint hypermobility, skeletal malformations, club foot, GI problems, chronic pain and fatigue, weakened or missing eye muscles and more.
To spread awareness and raise necessary research funding, Millan has initiated her own fundraising effort, “Shaving Lives for Loeys-Dietz Syndrome”, in which she plans to shave her head, 31 inches of hair, after raising her goal of $100k.
Millan has suffered from joint instability and other less pressing symptoms since she was a child, but wasn’t diagnosed until a large aortic aneurysm was found in her father during a pre-surgical workup for knee replacements.
“We’re lucky he went to a great hospital and they caught it. Too few doctors are able to identify the symptoms of a connective tissue disorder, like LDS, Marfan Syndrome, or Ehlers Danlos Syndrome. But recognizing these symptoms and sending these patients for heart exams will save lives.”
Millan is routing the fundraiser through YouCaring, a crowdfunding page, in coordination with Wesley Bange, President of the LDS Foundation. She is also working with Hal Dietz, a leading expert on the early recognition and treatment of LDS, who researches at John Hopkins University. While raising research funding is important to their cause, alerting the medical community of the disease and its symptoms is equally important, Dietz said.
“In the absence of awareness, many healthcare providers will refuse to counsel or even see complex patients that they don’t understand,” Dietz said. “In many ways this is actually preferable to providers with a false sense of knowledge and confidence that often leads to poor or even dangerous advice.”
With a greater awareness in the medical community and the world as a whole, Dietz said that the life expectancy of an individual with LDS, currently 26 years, would increase.
“I receive dozens of inquiries per week from patients and physicians from around the world who unequivocally state that early recognition of the specific features of LDS, accompanied by management guidelines, was life-saving or life-altering in some tangible way,” he said. “The existence of an LDS community has also profoundly changed the outlook of affected individuals.”
In addition to accepting donations through the YouCaring page, Millan will also be scheduling mini fundraisers like a zombie-themed 5K run, an auction, and a football tournament.
The official campaign page is at: facebook.com/ShavingLivesForLDS
Company Name: #ShavingLives
Contact Person: Kristyn Millan
Country: United States