Stiff-person Syndrome

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I LOVE LIFE

I suffer from a very rare condition that affects one or two people per million called Stiff Person Syndrome.

Almost four weeks ago, I came out of the Intensive Care Unit ALIVE – that word has never had such an impact in my life.

On the eve before the 12th of February, feeling weak I told my husband not to worry if I took time to call him post treatment. My mum asked me if I needed her to drop me, but I asked her to pick me up instead because I told her I did not feel ok.

It’s like I knew…

Post treatment, my blood pressure went so low that I passed out and after various attempts to wake me up I was taken to the ER and a few hours later to the ICU. I was soon diagnosed with Septic Shock due to four different bacteria in my blood. In twenty-four hours my condition became critical, and my dad asked my husband to travel immediately back to Beirut from Africa.

From these eighteen days, my memories are the ones that my subconscious created as I was delirious, in and out of consciousness.

I dreamt of life, and how much I loved it, of music and dancing. I heard my parents and husband’s voices and gentle words of love without being able to respond.

Their love and my strength woke me up and I was alive again and able to communicate.

I love life, my body and its strength is undeniable despite all of my sicknesses.

I am thirty-seven years old and neither Stiff Person Syndrome nor its treatments will defeat me.

Whatever defines you hold on to it, do the things you love, live life because it is truly beautiful, live every day and appreciate it.

Life, you brought me back I will not disappoint you.

To all my loved ones, this is for you!

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I LOVE LIFE

Today is International SPS Awareness Day. I dedicate this article I wrote for l’orient le jour, a french publication, to all the people who have inspired me along this journey.#StiffPersonSyndrome #RareDisease

I suffer from a very rare condition that affects one or two people per million called Stiff Person Syndrome.

Almost four weeks ago, I came out of the Intensive Care Unit ALIVE - that word has never had such an impact in my life.

On the eve before the 12th of February, feeling weak I told my husband not to worry if I took time to call him post treatment. My mum asked me if I needed her to drop me, but I asked her to pick me up instead because I told her I did not feel ok.

It’s like I knew…

Post treatment, my blood pressure went so low that I passed out and after various attempts to wake me up I was taken to the ER and a few hours later to the ICU. I was soon diagnosed with Septic Shock due to four different bacteria in my blood. In twenty-four hours my condition became critical, and my dad asked my husband to travel immediately back to Beirut from Africa.

From these eighteen days, my memories are the ones that my subconscious created as I was delirious, in and out of consciousness.

I dreamt of life, and how much I loved it, of music and dancing. I heard my parents and husband’s voices and gentle words of love without being able to respond.

Their love and my strength woke me up and I was alive again and able to communicate.

I love life, my body and its strength is undeniable despite all of my sicknesses.

I am thirty-seven years old and neither Stiff Person Syndrome nor its treatments will defeat me.

Whatever defines you hold on to it, do the things you love, live life because it is truly beautiful, live every day and appreciate it.

Life, you brought me back I will not disappoint you.

To all my loved ones, this is for you!#delirium #Coma #BackPain #MightyTogether #StiffPersonSyndrome #JuvenileDiabetesType1 #OrthostaticHypotension #Gastroparesis #Dysautonomia #Arthritis @angesdavis

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3 reactions 4 comments
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I'm new here!

Hi, my name is 2dSpasmsDaily51. I've been diagnosed with Stiff Person Syndrome; Total gastrointestinal dysmotility, and positional orthopnea. I'm looking for the latest treatments for Stiff Person Syndrome.

#MightyTogether

1 reaction
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Thank you for starting this group :)

I just wanted to thank you, Laura,## for starting this group. I know it’s just getting off the ground and hope I have the energy to contribute. My illnesses began 20 years ago (dysautonomia, chronic pain), but then ten or so years ago my body starting changing - bending and twisting at fairly small but painful angles and continue to worsen over time. My new neurologist believes my clinical picture and history are closest to stiff person syndrome which is progressive in nature.

I hope to learn (and share what I can) from your group.

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Recognition and what it means!!

Finally recognition of this insidious condition, we are now being spoken about, and all it took was for Celine Dion to be diagnosed with this condition for our lives finally to be taken seriously. Many of us have tried to get media coverage of this condition but they just were not interested, all that has changed and now they are contacting us to find out first hand what Stiff Person Syndrome is and how long it took for diagnosis and how we are effected by it. We now have the opportunity to tell our story to share our many journeys, not one of us has had a similar journey or are treated the same, we are all so different, we maybe 1 in 1 Million but we are all on this journey just think for a moment that means in the country I call home Australia there are approx 25 of us, we don’t have support networks like MS or MND or Parkinson’s we are our own support group, all we have is each other.

During this COVID lockdown I have hardly left my home for anything but medical appointments and now my appointments with my Professor are on Zoom he does not want me anywhere near my treating hospital my immune system is to badly compromised. How can you explain to a layman the effect Stiff Person Syndrome has on your life, the seizures truly terrifying the Tremors no part of your body is spared the twisting spasms, legs like concrete your inability to initiate movement then the kicker Anxiety and Depression. I hope and pray that with Celine coming out and saying she has this condition will help to move the dial, that more research can be done to find better treatments or a cure, people are no longer laughing when they here of this diagnosis they are starting to realise that this condition is akin to MS ALS / MND Parkinson’s in-fact I describe my condition as MS on steroids. To my fellow sufferers I say this don’t give up don’t give in, keep climbing this mountain that is our everyday lives, really what choice do we have? None, we are in this together and each of is holding the rope so that no one should fall or be left  behind.

#StiffPersonSyndrome

5 reactions 2 comments
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Does Lyme contribute to getting Stiff Person Syndrome??

Anyone out there that contracted Lyme before being diagnosed with Stiff Person Syndrome?? I wonder, could it be a cause???? #StiffPersonSyndrome #CommonVariableImmuneDeficiency #LymeDisease

5 comments