Personal Stories

Running on Empty

Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been a while since I’ve shared what’s been going on with Gary. Our living with superficial siderosis. I’ve been reluctant to share because the positives have been fleeting, and I want everyone fighting this disorder to stay hopeful. I need everyone to remain optimistic.

It didn’t have to be like this.

Even though Gary had an active bleed, he enjoyed quite a few years when chelation kept his symptoms in check. His hearing was terrible but no big nose dive; his balance was more of an irritation than anything, and his heart was a little glitchy. In addition, his MRIs showed a reduction in hemosiderin. Then he needed blood thinners, and no one would listen to my warnings.

Long-term anticoagulation therapy combined with an active bleed leads to disaster in superficial siderosis.

When No One Hears You

It took three years of shouting for Gary to receive the surgery to repair his bleed and three years of fresh blood flooding his central nervous system. As a result, first, he lost all the progress of his chelation therapy, then his hemosiderin spread to areas of his brain that had previously been unaffected—a 25% increase. Finally, his progression began to accelerate. New problems appeared almost monthly. We only thought he was seeing a lot of specialists. The final blow was the hematologist’s decision to discontinue deferiprone. He was dangerously anemic with no hope of positive progress.

In their opinion, Gary has crossed the point of no return.

When Hope Takes a Vacation

It was a dark time for both of us. Gary was terrified of the future. First, his hearing dropped off a cliff, and he fell almost daily. Next came the muscle tissue loss- he was shrinking away before my eyes. I was incredibly angry with every doctor who had dismissed my fears and warnings. I wrote letters that, in retrospect, may not have been very diplomatic but were effective.

Channeling the Anger

By the fall, I realized I needed a significant project to regain equilibrium. While looking for research funding opportunities, I stumbled across an FDA grant opportunity that looked tailor-made for Dr. Levy and the SSRA research goals. Federal grant applications are complex. Dr. Levy said it was the perfect grant, but first-time applicants rarely succeeded. Applicants with Ph.D.’s are turned down.

I began writing.

First, I had to plan out the study we would use to apply. 100+ pages. Next is a MOO- Manual of Operations. A step-by-step book of procedures the investigators will follow daily. 95+ pages. Then the application itself. Why do we deserve the grant? What will we be looking for? How is it important for not only your disease but all diseases? What is innovative about the way you’ve structured your study? The questions were complex, and I had to research the science behind every step. Another 50+ pages—a project budget. Oh my gosh, you would not believe what this project will cost.

I wrote for two months. Every day with no breaks unless Gary had to visit a doctor or attend physical therapy. Next, I sent it to Dr. Levy and a few others for comments and critique.

Rewriting and editing.

I had a grant application and a consortium agreement with Massachusetts General four months later. I submitted our application (yes, I do mean OUR) on February 15th, 2022. I channeled all my anger into something good for everyone. Now you know why I’ve been quiet.

The Future

Every day is a struggle for Gary. He is now functionally deaf. Communication is challenging, and his frustration is warranted. He falls. He breaks bones. His headaches once again linger for days, along with chronic constant pain. He falls asleep the minute he is still, but I can’t help but be thankful he’s getting a moment of respite. We heard he’s been approved for his fourth round of physical therapy tonight. It helps Gary to have somewhere to be on a regular schedule. To stay moving. The fight to remain out of a wheelchair full-time is a small victory. We all need a win, no matter how small.

We spent yesterday in the emergency department. A simple stomach bug crushed Gary. After two days of refusing to eat and drinking very little, he had become dehydrated to the point he could no longer stand and was incoherent. Our daughter lifted him out of bed into his wheelchair by herself. This episode was the first time I had ever truly worried I might lose him. He’s home now and doing much better. There is a lesson for all of us- superficial siderosis patients will not recover from simple bugs as quickly as others. The effects hit harder, so caregivers, please be vigilant.

Gary and I have accepted what will come. When I reread some of my early writing, I’m sad that future is out of our reach. It’s not for so many of you; I am heartened for this. The answers are out there waiting, and we will find them.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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  1. Roni, I am trying to procure Deferiprone with prescription from Dr Levy. He suggested Indian pharmacies with Indian generic Deferiprone called. Kelfer.  I have contact 4-5 Indian pharmacies but no one even responds. I’m not sure what to do and this condition is progressing!

    The only option seems to be Hickman Pharmacy, but they charge $60,000 for 1 year. 
    Desperately yours,

  2. Annie, I am a patient of Dr Levy too. My appeal for approval to use Deferiprone was turned down. Where\how did you purchase the medicine?

  3. Rory, you are an unbelievably strong woman. We are so fortunate to have you fighting for us and we owe you a million thanks!

  4. Wow! Thank you for all of this. 
    On the personal part: I hear you… completely… all of it. I am ‘with you’ for sure. 
    On what you have done for this community and continue to do: there are simply no words for the level of gratitude that lives in me… and I know I am not alone in that. 

  5. Dear Rory and Gary,
    I can’t thank you enough for all you do to help educate SS patients. I was diagnosed in 2011, and took FERRIPROX for a little over five years. My bleed is not active at this time (we believe). Was so thankful for Dr. Levy and his expertise, as no doctor here in Peoria Illinois knew what to do with me! My husband took me to Johns Hopkins in Baltimore to see Dr. Levy, and I literally cried when I left, because he understood my plight! God bless you both, and be assured of my prayers for you and for perseverance to continue the journey.
    Annie Plaag

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