Superficial siderosis is ultra-rare. In fact, if you searched the national or international rare disease databases until the last few years it wasn’t listed. We should be glad so few will face a diagnosis of superficial siderosis, but you can’t help but wonder.
Is there a common thread to be found?
I often find myself thinking about this vey topic. Dr. Levy has said they don’t know why some people are overwhelmed by the blood infiltration. An unlucky spin of the wheel? I’m not medically educated but what if I brainstorm and toss around a few ideas?
First, let’s talk about what we do know.
- Superficial Siderosis is not hereditary; you aren’t born with it.
- Superficial Siderosis is not contagious; you can’t spread it or catch it.
- Age or gender do not play a significant role in the diagnosis; patients were diagnosed at an older age due to the slow nature of the progression, but newer MRI technology is making earlier detection possible.
- All confirmed superficial siderosis patients had experienced unnatural blood infiltration into their central nervous system; trauma, surgery, aneurysm or stroke that caused long-term bleeding.
- We know the majority of the population will absorb this blood back into their system with no residual effect; superficial siderosis patients are the exception.
- All superficial siderosis patients have an overwhelming amount of free-iron molecules. They float around in the cerebrospinal fluid until curbed by ferritin and settle as hemosiderin on your tissue.
- Most (if not all) patients are unable to fight the neurodegenerative effects of free-iron after it escapes from its ferritin binding in your hemosiderin deposits.
You’re right. I don’t have a lot to do on a Sunday except pose hypothetical questions to the universe.
I do have an uneducated theory. Let’s play What’s the Same? Long term bleeding, yes. Hemosiderin deposits, yes. A major traumatic health event in your life, yes. What’s one thing common with all of this?
- CT Scans
- Cardiac Imaging tests
- Nuclear Medicine
What these things have in common? Ionizing radiation. If you’ve been in an accident, had an aneurysm, a tumor, headaches or any number of health events you may have had multiple procedures using this technology. Radiologists take extreme care when working with their equipment.
Many superficial siderosis patients had numerous prior health concerns that required medical testing. Gary suffered exposure from low dose ionizing radiation during his military service. It caused the growth of a benign tumor inside his spine at C-2/C-3. Then came the x-rays and CT scans. The removal of this tumor in 1992 left a dural defect. You know the rest.
On average, a person will not be affected by the small amount of ionizing radiation received from a few scans over the years. What if your health concerns required a higher instance of testing? What if it is older equipment with higher exposure levels? What if you are part of the tiny population who experiences DNA changes on a cellular level when exposed to low dose ionizing radiation? Remember, superficial siderosis patients are not average.
Radiation exposure from medical diagnosis may
contribute to the etiology of neurodegenerative
Answers to these questions would only provide insight as to why some people develop superficial siderosis while the majority will not. On the priority scale of research projects it ranks as not important. I’m sure I’ll never know the answer unless some sweet medical student needs a random topic for a paper. This is purely a hypothesis on my part, and in the end, I’m just a person who loves someone with superficial siderosis.
¹Long-term effects of ionizing radiation on the brain: cause for concern?
Stefan J. Kempf • Omid Azimzadeh •Michael J. Atkinson • Soile Tapio
DOI: 10.1007/s00411-012-0436-7 · Source: PubMed