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My name is Lea Jabre, I suffer from a very rare condition that affects one or two people per million called Stiff Person Syndrome (SPS). SPS has robbed me of living – or so I thought. In February 2024, I came out of the Intensive Care Unit ALIVE. That word has never held more meaning for me than it does now.
Surviving Septic shock made me face my new reality: my SPS is progressing fast and pain has no limit to its growth.
What is pain? My deformed body is testimony to it. The end of having “normal” relationships with your significant other and your family. The end of my career. The end of a “normal” social life. The loss of my freedom.
These examples only scratch the surface of all the pain I feel. I could write so much more, but it would be hard for you to understand it unless you also had SPS – I know I didn’t understand pain like this before my diagnosis.
Recently I had a mental breakthrough that to survive and to fight, I needed to take ownership of my pain. Pain is subjective; everyone experiences it at some point in their lives, yet there are no tests to measure it, no tools for us to understand the different kinds of pain and how it affects our brains.
Why am I dwelling so much on pain? It is one of the many invisible symptoms of SPS. We live in a world that conditions us from birth what normality should be. I am often told I don’t look sick while I am getting sicker every day. Who decides what looking sick means and what pain really means? What can I compare with? I know the answer, I feel it, yet I know due to lack of research of rare diseases like SPS, not many will be able to understand why it could be the end.
Society conditions us to “better understand” and accept someone’s experience and measure of emotional and some physical experiences deemed painful, so much more than someone’s rare and unrelatable chronic physical pain. Did you know muscles could push bones out of place and break them? Did you know that untreated pain leads to being irrational? SPS is not just physical, it is heavy emotional and mental pain. There is no guidebook on how to help us, to treat us, to understand us – YET.
What does 2025 have in store for all of us that suffer SPS, from the pain and other symptoms caused by this horrid disease? Will it be the year it kills me because of unfunded research?
I was given a second chance in February, and have chosen to serve as a patient advocate to give people hope for the future. I decided to try raising funds for the Johns Hopkins Stiff Person Syndrome Center, led by Dr. Scott Newsome, for research to develop targeted treatments for SPS.
Will you join me?
I invite you to make your tax-deductible gift to support novel biomarker discovery research projects securely through this online portal, or contact Kaylin Kopcho, Director of Principal Gifts - Neurology, for assistance with other philanthropic vehicles (donor advised fund, gift of securities, etc...) or to learn more. Kaylin can be reached via email at kaylin.kopcho@jhmi.edu or phone at +1 (443) 287-7871. Thank you for your consideration, I am grateful.
