Superficial Siderosis Life Expectancy
It’s human nature to wonder How long will I live? When you’ve been diagnosed with a life-changing ultra-rare disorder like superficial siderosis, thoughts like this can consume you. Superficial Siderosis Life Expectancy, four words make it intensely personal. The early impressions I found online were dark; there is no cure. The day we learned about superficial siderosis, I read one single sentence in a very early report, the damage is irreversible and fatal. My heart dropped. The word fatal is a definite attention grabber. However, five years into this journey, we have first-hand insight with a much clearer understanding of the nature of this disorder.
The Toll On Your Body
If you review the possible combination of symptoms that may assault you, it should become clear while you may suffer body and soul, none are life-threatening in an immediate sense. However, there is no doubt the toll on your body is punishing. The possibility of dementia is alarming, but in reality, only a tiny percentage of our community will ever face Dementia is the progressive decline of cognitive function du... More.
Symptoms will progress so slowly during the early years they make you crazy with frustration, but it does take time. Twenty-two years passed after Gary’s tumor removal before his symptoms progressed to where he had to change his life radically. There does seem to be a point of symptom acceleration (To read about Garys’ current condition see Inescapable Realities). Slow progression eventually evolves in response to a patients’ hemosiderin deposition. The likelihood you will develop multiple serious superficial siderosis related health problems down the road is strong if you have a heavy build-up over large areas.
Repairing The Bleed Source Early
Some will have their bleed source repaired early, so they have a chance to escape heavy hemosiderin build-up. Five years into this journey, the anecdotal evidence is overwhelming; even if an active bleed is repaired, the damage will continue if hemosiderin deposits remain in place. With only one feasible chelation therapy option available, whether due to cost or inability to tolerate the medication, not everyone will have an opportunity to remove the iron.
Turning To The Expert
Let’s reconsider the question, Life Expectancy of Superficial Siderosis Patients? In 2015 this was the only answer Dr. Levy was able to give our community-
...does superficial siderosis lead to an early death? We don’t know the answer to that. We don’t know if superficial siderosis causes earlier mortality. The reason we don’t know that is because we haven’t studied enough patients over time to be able to see that.– Dr. Michael Levy 2015, SS Webinar
Four years have now passed with time spent observing multiple patients. Dr. Levy offered us an updated opinion during his 2019 Superficial Siderosis Presentation to the SSRA.
I always get this question, so I really just want to address it right now, which is, does Superficial Siderosis lead to early death? The answer is probably not. We don’t see an early mortality directly related to the superficial siderosis, but it is profoundly disabling. Patients do end up completely deaf sometimes, and they can be disabled to the point that they’re in a wheelchair, all day long even. If you consider those circumstances, which increase the chance of blood clots and that really increase the ability to live a full life, then, yes, superficial siderosis is not a friendly, easy, mild disease. This is one of those difficult conditions that’s hard to live with. While it may not cause an early death, it certainly makes life very difficult to live.Dr. Michael Levy, December 2019
Gary has learned first-hand just how disabling this disease can become. We see it every time we read an update from fellow patients whose journey we’ve followed along with these past years. One of the more common associated symptoms superficial sider... More and hopelessness are real enemies, along with feelings of isolation or loss of independence. Constant reminders of what this disorder brings to the unlucky few diagnosed with superficial siderosis.