After being misdiagnosed for 13 years, 41-year-old Rene Lopez of Gold Bar learned that she had a degenerative disease so rare that there have been fewer than 270 reported cases worldwide.
Superficial Siderosis (SS) is a neurological disease that affects the brain and the central nervous system. Very little is known about the cause of the condition, and there is no known cure. The side effects of the disease vary, but typically include hearing impairment, headaches, memory loss, dementia, dizziness, balance issues, numbness, incontinence and pain.
The disease is progressively disabling, chronic and potentially fatal.
Wanting to do something to raise awareness about the condition, Rene's daughter Amadita has been working to organize a fun run in Sultan. The event, called the Silent Bleed Superficial Siderosis Pajama Fun Run, is a 5k run that will take place at 1 p.m. on Sunday, March 8, in Osprey Park (801 1st St.).
Amadita explained that the reason for running in pajamas is to demonstrate solidarity with SS sufferers, who sometimes feel too ill to get out of bed. Event participants are invited to walk, jog or run in their pajamas.
"It's fun, but it has a deeper meaning also,GÇ¥ Amadita said.
SS occurs when iron salt deposits accumulate on the brain's surface, the spinal cord and the cranial nerves. The condition is caused by chronic bleeding in the subarachnoid space of the brain, a small cavity located on the surface of the brain's hemispheres. In most cases, the source of the bleeding is never found.
Amadita, 16, has watched her mother struggle with the disease for as long as she can remember. The family of seven moved to Gold Bar about a year ago after living in Sultan for more than 10 years.
"She has good days and bad days. It causes memory loss also, so sometimes she forgets our birthdays, or like, sometimes she'll forget our ages,GÇ¥ Amadita said. "Some days she's dizzy so she can't walk very well, and sometimes she just hurts, which makes it harder to do things.GÇ¥
Rene is a member of a Facebook support group for SS sufferers, through which she became acquainted with SS sufferer Jason Roberts. Roberts, who lives in the United Kingdom, is working to establish his charity organization, the Silent Bleed. Amadita and Rene are working to support his efforts, in hopes of extending The Silent Bleed's network to include the United States.
Little is known about SS, which makes the disorder difficult to treat. Amadita said, in the beginning, it was challenging to locate a neurologist, who was willing to spend time researching the condition. Next month, Rene will travel to see Dr. Michael Levy, a neurologist for Johns Hopkins Hospital in Baltimore, Maryland, who is currently the leader in SS research and treatment.
Levy has been conducting observational studies on a drug called Ferriprox, and Amadita is hopeful that once her mother sees him, she'll be able to start on a treatment plan that includes the drug.
"It can't reverse the damage that's already been done to the brain or spinal cord, but it can hopefully stop or slow the progress of the disease,GÇ¥ Amadita said.
Amadita's 5K pajama fun run will take place at the soccer fields located at Osprey Park. The event will include food, prizes, a raffle and T-shirts. Baked items will be available for a donation.
The cost to participate is $20. Registration will also be available on the day of the event.-á All funds raised will go toward helping the Silent Bleed become established as an official nonprofit organization, and to help support the SS research being done by Levy at Johns Hopkins Hospital.
For more information on the event, or to sign up for the run, visit www.facebook.com/SS5KPJFunRun, or email Amadita at amaditalopezmoss@gmail.com. For more information on the Silent Bleed charity, visit www.silentbleed.co.uk/.
Comments
Use the comment form below to begin a discussion about this content.
Sign in to comment