Linden resident lives with rare disease
Linden resident Gary Daniel is fighting Superficial Siderosis, an ultra-rare disorder diagnosed in less than one per three million Americans. Gary spent eleven years enduring countless medical tests during his journey to put a name to the profoundly disabling symptoms that were taking over his life. When a Texarkana neurosurgeon sent him to Advanced Imaging in late 2014 for an MRI, an observant radiologist discovered the cause of his mysterious symptoms. A 1992 cervical tumor surgery had allowed a Dural defect to cause long-term bleeding into his spinal fluid. This bleeding released neurotoxic free-iron molecules, building into a layer on the surface of his brain and spinal cord, resulting in Superficial Siderosis.
“Superficial Siderosis is classified as an ultra-rare disorder. With a little over 300 patients now identified in the U.S. and a yet to be determined number worldwide. The incidence is thought to be far greater than currently diagnosed” -Superficial Siderosis Patient Registry
Patients who develop Superficial Siderosis suffer signs and symptoms common to more well-known neurodegenerative diseases. Often, they are misdiagnosed and treated for Multiple Sclerosis, Parkinson’s, or Multiple Systems Atrophy due to the rarity of the disorder.
“My vision impairment made it impossible to continue driving across the country. In addition, my progressive loss of hearing, lost sense of smell, and impaired balance was so severe I was forced to resign from my job in Oil Field Services for safety concerns for myself and my co-workers. It took eleven years of referrals to specialists in Texarkana, Longview, and Tyler before I learned why this was happening to me.” -Gary Daniel
Battling a rare disorder is difficult, but Gary is no longer alone in this fight with the support of organizations like the Superficial Siderosis Research Alliance (SSRA) and local Atlanta business, Café’ Crema. Gary is the uncle of Café’Crema owner, Tanya Beers. She donates a portion of every sale to the SSRA to benefit Superficial Siderosis research.
During September, patients, families, and friends around the world now observe Superficial Siderosis Awareness Month. Each of us knows someone with a rare disease or disorder. In our country, more than 7,000 rare diseases affect over 25 million Americans. Unfortunately, these families often have trouble accessing life-saving medical treatment or other services because their insurance companies or physicians are unfamiliar with their diseases.
About Superficial Siderosis
Superficial Siderosis of the Central Nervous System
Superficial Siderosis (Infratentorial superficial siderosis (iSS)) is a disorder that develops over time when long-term bleeding into your central nervous system (CNS) overwhelms the body’s natural defenses. As a result, when blood cells break down, neuro-toxic iron particles are left traveling throughout your spinal fluid. In the act of self-protection, your system reacts by releasing proteins to trap these iron particles by encasing them.
Hemosiderin is the result of this protein and iron combination. Over time, gravity pulls sticky hemosiderin into a coating layer over surfaces with direct exposure to circulating spinal fluid. Long-term exposure to free-iron particles escaping the hemosiderin layer is toxic to the underlying neural tissue.
The development of Infratentorial superficial siderosis may often be traced to a single triggering event. It might have been as long as 30 years past depending on the nature of your bleed; brain bleeds or spinal surgery, Dural tears resulting in pseudomeningoceles, head injury or traumatic accident. Any event which results in long-term chronic bleeding into your centra
• 95% will develop progressive sensorineural hearing loss in both ears.
• 88% will experience signs of gradual wide-based gait, balance, and mobility issues.
• 76% will experience spinal cord and nerve dysfunction.
• The largest number of identified U.S cases are residents of Texas
About the Superficial Siderosis Research Alliance (SSRA)
The Superficial Siderosis Research Alliance (SSRA) is a U.S.-based 501(c)(3) nonprofit organization supporting patients and families who are diagnosed with superficial siderosis. Founded in 2019 and headquartered in Waukesha, WI, the SSRA seeks to lead the way for patient advocacy, physician education, and public awareness.
The Superficial Siderosis Global Patient Registry and Research Group are administered remotely from Linden, TX.
For information about Superficial Siderosis visit livingwithss.com
To learn about the Superficial Siderosis Research Alliance Mission visit ssra.livingwithss.com Patients may enroll in the Superficial Siderosis Patient Registry at superficialsiderosis.org