Lea Jabre lives with stiff person syndrome (SPS). In February 2024, she developed septic shock and was in intensive care for 16 days. This traumatic experience has reminded her of her physical limitations but also reinforced her cast-iron determination to advocate for people living with rare disease

Written by Lea Jabre

Can life ever be perfect? And what does perfection really mean? Surely, it has a unique meaning to each one of us.

What if you finally reach your understanding of perfection and life slaps you in the face again?

What do you do? Do you give up or do you choose life? Here is the real question, can one ever have answers to all these questions…

I am one in a million. At 34, after more than five or six years of traumatic medical gaslighting, I finally got diagnosed with stiff person syndrome (SPS), a very rare disease that has no answers and is filled with a future full of uncertainties. Due to lack of funding for research, treatments are at best plasters for wounds that no one could ever imagine even existed.

For a little context, aside from SPS being an aggressive neuromuscular and degenerative autoimmune disease, one of its many invisible symptoms is pain. I have come to learn that pain is an abstract concept—everyone feels pain. I thought I knew physical pain, but SPS took pain to another level that cannot even begin to be understood by anyone unless they have the disease…

Today, despite it all, I still love life, with my cane, my limited ability to walk and my pain. However, the life I imagined, most of my life, is just a simple dream today.

The girl who loved music, who loved to dance, cannot move her body any more. She has lost complete control of it.

One thing my family, my husband and I have learned is that having a rare disease that no one really knows much about makes things much more complicated.

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On 11 February 2024, I properly saw how deformed my body is. My muscles are pushing my bones in all directions. Although I suffer from many other diseases, this hit hard. For one it explained this new pain that had been slowly creeping up on me, on top of constant pain from my stiffness.

On 12 February, after a plasmapheresis [plasma exchange, PLEX] treatment, I lost consciousness…

Septic shock was only something I had vaguely heard about… why would I know or even want to know more? Today it is something I have survived and am recovering from.

Mentally, I am still trying to reconstruct what happened during the 16-day ICU admission. The week leading up to my PLEX treatment, I complained to one or two people about shortness of breath, but I didn’t give it much importance.

On the eve before my treatment, while looking at my deformed body, I told my husband who works in Africa that I was tired and not to worry if I took slightly longer to send him a message post treatment. My mum called and asked me if I wanted her to drop me off in the morning; with no hesitation, I asked her to come pick me up instead because I felt very tired.

Looking back, it is like I knew …

I remember waking up to go to my PLEX treatment, I remember getting in the car… and then, I have no recollection of 14 out of my 16 days in the ICU.

Many of my close friends living in Lebanon, abroad or a couple of my very close SPS friends all knew I was having a treatment. They also know that my phone never leaves me and that I am usually very quick to answer… By the next day with no replies from me, most of them figured something must have gone wrong with my treatment.

I was resuscitated on the first night because of my blood pressure dropping so low that things spiralled out of control fast. I was then diagnosed with septic shock due to four types of bacteria in my blood. I was deemed critical for at least another four or five days before the ICU team and my doctors started having hope again.

I thought I was unconscious the first few days when I was in critical condition but, apparently, I am the one who adamantly refused to be intubated. I thought I was conscious after the infections were better controlled but I was not. I was in out of sleep and completely delirious.

I am lucky to be alive, but SPS has flared massively since returning home.

***

My support system learned after this traumatic event to never let my SPS be put on the side and forgotten about. Regardless of the urgency and danger, SPS is important to tackle. In the same way as my type 1 diabetes is considered and managed, it must always be taken into account.

The whole experience was very hard to face; however, the damage done to my SPS today is taking an even bigger toll on me. A lesson learned for all of us—my loved ones and the doctors—which makes me more determined to continue advocating for rare diseases.

If pain had started to creep in before 12 February, this experience has taught me even more that there is no limit to it today.

Did anyone tell me when I went home what to expect during my recovery, obviously not. Did anyone share with me what happened during these 16 days, no. Like the rest of the decisions that were taken, I had to figure out by myself what recovery meant for me.

But what I was reminded of, is that my body despite being so ill, is so strong. Life, I still choose you, and I am not going anywhere yet because there is so much more dancing left to do.

Editor’s note: If you would like to share your own rare disease story, please get in touch: hello@rarerevolutionmagazine.com

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