**The Sneddon’s Foundation in the News**
Today our friends at NORD, the National Organization for Rare Disorders, posted a blog by the Sneddon’s Foundation’s Executive Director, Diane O’Leary, PhD.
The blog, titled “The Solution to Diagnostic Delay May Be Closer Than We Think”, discusses the delay most rare disease patients face in reaching accurate diagnosis, and offers a potential solution to the problem.
As summarized by NORD at their Facebook page, O’Leary suggests that “medically unexplained symptoms shouldn’t so quickly be translated to psychiatric diagnosis”.
Dr. O’Leary is also co-founder of The Coalition for Diagnostic Rights, with Bridget Mildon, Executive Director of FND Hope.
The CDR calls for change to current standards for diagnosis of “Somatoform Disorders” (i.e.”it’s all in your head”). Every patient has a right to available medical care and loose standards for somatoform diagnosis should never intrude on that right.
Read Dr. O’Leary’s blog at NORD:
For more info on diagnostic delay and “it’s all in your head” visit The Coalition for Diagnostic Rights:
Welcome to the Sneddon’s Foundation.
Sneddon’s Syndrome is a rare neurovascular disorder. It is characterized by a combination of a bluish, sometimes net-like mottling of the skin and either severe but transient neurological episodes or full stroke.
Most Sneddon’s patients respond well to appropriate treatment. Many go on to lead essentially normal lives – but only if their doctors are familiar with current research on both diagnosis and management.
Many Sneddon’s patients suffer day-to-day battles with dizziness, severe head or eye pain, often high blood pressure, extreme fatigue, exercise intolerance, unusual muscle spasms, or tremors. For all Sneddon’s patients there are worries about the possibility of stroke and memory problems that sometimes develop into early onset dementia.
Recent publications make it clear that Sneddon’s can impact not only the brain, but other areas of the body as well, particularly the heart and kidneys. Many researchers argue now for an understanding of Sneddon’s as “systemic” rather than focused only on the brain.