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Sarah Jones Adult Panelist Schizencephaly Convention

 

My Name is Sara Jones, I am 34 year old and I was born with 3 brain malformations Schizencephaly, Polymicrogyria and Pachgyria.

My schizencephaly is one small cleft on the right side frontal lobe with two small slits on both sides the occipital lobes.

My Schizencephaly has come with many challenges, I have leftside Hemipelgia cerebral palsy, Epilepsy, blind in my left eye, Autism, mirroring disorder and mild intellectual delay.

Even though the symptoms of Schizencephaly were there from birth, I wasn’t diagnosed until I was 27, MRIS weren’t available when I was a kid and Cat scans didn’t pick up on the detail.

Growing up with Schizencehaly was interesting, as most doctors didn’t know why I was so different, nothing ever made sense. There is a favorite lyric of mine from Pink Floyds Comfortably numb I can’t explain, you would not understand this not how I am, thats how I feel every time trying to explain to doctors whats going on with me, and often feel I am educating them. Im sure most of us can relate to this.

As a kid I never crawled, I think because my left arm couldn’t support me and I hated being on my stomach. I started walking at 3 but used a stroller until 5 as long walks were difficult. I was unable to put my foot flat on the floor, many years of casts and afos helped but also left my leg very thin.

I have had two surgeries one on my left leg and one on my arm, my left leg was a tendon release as my foot was fall over and very weak, the tendon release on my arm I asked for myself, as I wanted to beable to turn my hand around. I was told it would only help 30 percent, well 30 percent is better that no percent.

I think the worst part of Schizencephaly is the Epilepsy and seizures:

Seizures started for me at 12, they believe puberty was the biggest factor, though they suspect that I could’ve had smaller seizures as a small kid.

Overall I am lucky with seizures they didn’t really get bad, until I was 27, after I had my third kid. I started having many different types of seizures, which I was told was impossible, until they saw my MRI then it was ahh oook.

I was on many different medications, dealing with many different side effects, which sometimes to me, just as bad as the seizures.

After being on a lot of different medications, which nothing was really helping talk of brain surgery, which personally I wasn’t comfortable with. I decided to do some research and digging into medical cannabis and decided that I would give it a try, that I had nothing to lose.

I have been using medical cannabis oil for 5 years now, I use multiple canabiniods high THC, CBN, CBG, THCA low CBD. I haven’t used any medications in 3 years.

My last EEG was normal and I roughly see 2 focal seizures a month, sometimes I can go few months without any, I don’t look for 100 percent all of the time, when it comes to seizures because of the malformation it makes it very diffcult.

My Hopes for the future is too find a doctor that is willing to do research into brain malformations and why they happen. I often show doctors my picture of my MRI, just so they would understand why my body works a little different.

Being on the Schizencephaly Adult panel is very exciting, I really look forward to sharing more of my experiences, answering questions and giving advice to the families, kids/adults affected by Schizencephaly.

For free tickets to this limited seating virtual event.

Please go to

Convention tickets

 

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