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Jadyns Scheuermanns Kyphosis

$6,750 of $5,800 goal

Raised by 47 people in 11 months
Created June 9, 2018
Jadyns Mitzvah Project

Introduction to what a mitzvah project is: A mitzvah project is a project based around my batmitzvah, a jewish celebration for becoming a woman. In the process of becoming a Bat Mitzvah, you must also perform a Mitzvah (a good deed). My good deed is focused on creating awareness and acquiring donations for a rare spinal disorder called Scheurmanns Kyphosis.It is a skeletal disease that causes a forward curvature of the spine and happens during a growth spurt in adolescence. The vertebra change from a healthy rectangular shape to a triangular wedge shape. Symptoms of this spinal disorder include slouching or hunchback, back pain, severe back pain when participating in activities, stiffness and loss of flexibility. Early intervention is key as corrective measures can be taken while bones are still growing.

My personal story: I have a very personal relationship with this disease because in 2017 at the age of 12, I was diagnosed with Shermans Kyphosis. My story started when I was in 5th grade at 11 years old and my mom noticed my posture was very off. I struggled with standing up straight. It never seemed natural to me even though I was trying. I started feeling worse and very tired and my back started to hurt me on a regular basis. I even pulled out my back one day in 6th grade just doing a relay race and was confined to bed for 24 hours. My parents ultimately decided to take me to the pediatrician. She commented that it was because of constantly leaning over looking at my phone and that I needed to work on strengthening my core. Well, my back continued to get worse and a month later, my parents took me to visit a back specialist. We were all in complete shock with my diagnosis. She said I had a rare spinal disorder and unfortunately they only do surgery on severe cases and that it might not worsen and to come back in 6 months. My “Jewish” parents, worrying and concerned decided to get a second opinion with a world renowned doctor at Dupont Hospital for Children. As time passed, my back started looking very hunched and they were becoming increasingly worried. This Dr, Dr. Shah, said my curve was a lot worse than the previous doctor stated and that if it effects my quality of life and Im in pain, that surgery was an option. I decided to work very hard by going to physical therapy 2 to 3 times a week with a specialist in Schroth therapy which is a specialty used for scoliosis. It was worth a shot to try as I was in a lot of pain on a daily basis and it really started effecting my social life. I really want to live a normal teenage life and be active and hang out with my friends or even do sleepovers. About 6 months after therapy, I went back for my follow up and I was starting to feel a lot more pain and my back started to look worse. I never even realized it, but it was effecting my lung capacity. When Dr. Shah checked me for my follow up visit, my back had a 90 degree curvature. The normal human spine has a curve of anywhere between 0-40 degrees. Hence, we decide surgery was my only option.

My surgery was scheduled for November, 2017.It was a very difficult and painful recovery. I now have 2 titanium rods and 20 screws with 2 hooks on my spine. My spinal fusion is from T2-L3. Even though I went through this painful surgery, I only missed a full 6 weeks of school. Part of my rehabilitation required meI to relearn many common everyday things. Simple things like putting your socks and shoes on and getting dressed became a difficult task. It has been 5 months since my surgery and I am finally able to do many things that I couldn’t before my spinal started to cover but Im still recovering. If, similar to scoliocisis, if they reguallary check for Shermans and if my spinal disease was caught earlier, I would have maybe been able to wear a back brace and not go through such a painful surgery.

How to check if someone has Scheurmanns Kyphosis:
Scheurmanns can be tested while testing for scoliosis, but instead of looking behind the spine you look on the side. Diagnosing it is quite simple but it must be done before bone growth stops which is typically before the age of 15 but sometimes sooner. FIRST: Have the child bend over and touch their toes. Look at their back from the side and compare to the diagram I am showing you. The diagram on the left is a healthy back. The one on the right shows kyphosis. If you see any type of abnormal curvature, see your doctor and request an X-ray. It literally takes seconds to look at someones back to see if it is shaped differently. Doctors, nurses and even parents can evaluate. Early intervention is best and include exercises to strengthen and stretch as well as bracing. Surgery is done if the curve is severe or pain is significant or other complications occur due to the extreme curvature.

Goal: My goal is to improve awareness and increase testing of Scheurermanns’ disease. I also want to raise money to provide funding for research, including genetic testing, long term case studies, and raising awareness to assist in early detection. No one really knows for sure what causes this disease. It can happen to anyone. Living with back pain is difficult and not something that anyone should have to suffer from. I am one of the lucky ones that was diagnosed and thankfully I am being treated for it. There are many children out there that may never be diagnosed or people just think they have poor posture. If it is left untreated, it may cause significant and life altering spine deformities as they age. In severe cases, it can lead to spinal cord compression and even lung and heart issues. Please consider donating to this fund down below. All donations are completely tax deductible. It helps fund studies regarding Shermans disease AND helps schools, educators, parents and even physicians to become more knowledgable on screening for it. Thank you for making a difference!

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Today is Jadyn's Bat Mitzvah, thank you to all of our family and friends for celebrating this event. We can't believe she is only 7 months post surgery!
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$6,750 of $5,800 goal

Raised by 47 people in 11 months
Created June 9, 2018
Funds raised will benefit:
Scheuermanns Disease Fund
Certified Charity
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Mcmurray, PA
EIN: 475066738
How it Works
  1. You make a donation using a PayPal account or a credit/debit card to PayPal Giving Fund (a 501(c)(3) charitable organization).
  2. After the deduction of payment processing fees, PayPal Giving Fund delivers the funds it receives to the chosen charity on a monthly basis.*
* If, after reasonable efforts, PayPal Giving Fund cannot deliver donations to this charity, the funds may be donated to another charity per PayPal Giving Fund’s policies.
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JC
$50
John Carletti
10 months ago
NK
$110
Neal & Lydia Krouse
11 months ago
RF
$100
Renae Flanders
11 months ago
SH
$25
Sherri Hand
11 months ago
RA
$100
Ronald Agypt
11 months ago
BM
$100
Bryan Morens
11 months ago
BG
$25
Bryan Gaffin
11 months ago
RK
$50
Raquel Krouse
11 months ago
DM
$360
Danielle McCauley
11 months ago
$200
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11 months ago
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