SSRA Leadership 2022

The Superficial Siderosis Research Alliance is pleased to share the appointment of Kelly Morgan to the SSRA Board of Directors. In addition, Ms. Morgan will serve as a member of the Grant Oversight Group and Board Member-at-Large. Following the appointment of Ms. Morgan, the Board will comprise ten directors.

“We are pleased to welcome Kelly Morgan to the SSRA Board,” Kyle Dempsey, SSRA President.

“Kelly’s deep experience in financial oversight will be invaluable to the SSRA as we expand our entry into the federal grant application program. She also offers a unique perspective as a person diagnosed with superficial siderosis. We recognize it is important our leadership is inclusive to the SS community we serve.” Rori Daniel, SSRA Vice President.

About Kelly

My name is Kelly Morgan, I am 59 years old, and I was diagnosed with superficial siderosis in 2011. A few years after the birth of my third child, I noticed a loss of my sense of smell and taste. Because life gets in the way, after a few years of missing these two senses, I went to an ENT, and he recommended an MRI. Once my doctor confirmed a superficial siderosis diagnosis, I realized that all my other odd, intermittently occurring symptoms were related.

I searched the internet looking for information and didn’t find a whole lot, and when I did, it was primarily random case studies. My local doctors had heard of superficial siderosis, told me it was rare, and that there was not much they could do for me but monitor my symptoms. Finally, I connected with Dr. Michael Levy in May of 2013. While discussing my diagnosis, he mentioned a possible bleed site on my spine and his study on possibly removing the iron deposits.

I went through all the usual testing and procedures to locate the bleed, including MRIs, MRA, complete cerebral/spinal MRI, multiple lumbar punctures, two CT Myelograms, blood patches, and a cerebral/spinal angiogram. But, unfortunately, after all these procedures, we still only have a theory about the source of my bleed. And that theory is that my spinal cord lining is detaching from the spinal column, which causes micro-tears/bleeds/fluid leak and pressure change (brain sinking), which causes a very debilitating headache.

Having lived with this condition for so long, I have figured out that I can’t overexert my core or bend over at the waist, which has changed my life. I no longer play tennis, softball, volleyball, snow or water ski, garden, or clean the house like I used to. I still overdo it from time to time, but now I am pretty good at predicting when I’ll have a headache which also means I’ve had a bleed.

Until my diagnosis, I had been a relatively active woman, wife, mother to 3 daughters, office manager, PTA President/PTO Treasurer, and committee volunteer, and currently, I work full-time. I feel it is essential to maintain my physical fitness. To that end, I work out with a personal trainer and try to work out at least five days a week. I will continue to lead as full of a life as I can for as long as possible. Since my progression is slow and I can deal with my everyday symptoms well, I am not doing anything to chelate the iron but would like to help those who are worse off.

Stay healthy and safe,

Kelly Morgan

SSRA Admin