Scheuermann's Disease Treatment

i am a lot of things, a lot of positive things - i do everything i can to do good, and be good. i am hard working, passionate, and driven. i create, i write, i perform. i love movies and literature. my favourite colour is synonymous with my name... the list goes on. i have so much to offer, so much to share. i am multi dimensional. but not many people bother to look past the label i have figuratively strung around my neck. the label being, "disabled". to most people that is all i am.
i've lived with scheuermann's disease since i was 10. it is a debilitating condition, a disabling condition. alongside scheuermann's i also have severe kyphosis and scoliosis - all of which affect my spine in different, opposing ways. kyphosis has made my spine "c" shaped from the side, whereas scoliosis has made my spine "s" shaped from the front. the average spine has a slight curve, but is relatively straight - mine is anything but. both kyphosis and scoliosis affect my posture. i cannot sit or stand up straight. i am hunched over forwards as well as to the right. this makes walking difficult, as well as laying down. nothing is pain free for me. my hunched, twisted posture also causes inflammation in the muscles around my spine, which then puts pressure on my internal organs - especially my lungs. scheuermann's also causes muscle inflammation - so the pain and pressure i feel is only exasperated.
this said pressure makes me feel like i have constant heart burn, and breathing can be extremely difficult. my digestive system is also effected - i get frequent stomach pain, and eating is not enjoyable.
in the 8 years i have dealt with the above, my condition has only ever worsened with every year that passes. for example, 2 years ago i could move around independently, and i didn't need to use walking aids. and now, i have to use a crutch/walking stick most days, and i am now also having to use a wheelchair more and more frequently. this is terrifying as if the decline in my health continues, i fear i will be wheelchair bound. this would make my chosen career path almost impossible, and the discrimination i face currently would only increase.
there is no straight forward treatment for scheuermann's, kyphosis or scoliosis, especially now that i'm fully grown. "so why did you not have treatment when you were first diagnosed?" - i hear you, and i think about that every. single. day. the past 8 years have been a constant battle, not only personally with my disability, but with the nhs. every treatment i have ever had has been self funded - which has been and is still incredibly tough. spinal treatments are complex, and are some of the most expensive in the medical field. for example, a simple, 40 minute session of chiropractic treatment can cost me £80. and most chiropractors recommend up to three sessions a week. £240. more intense treatments, which take place at spinal clinics with specialists, are obviously even more expensive. this makes treatments and pain management almost impossible for me to access. the nhs won't even offer me pain killers anymore, as i have apparently "exhausted" them. so alongside the cost of treatments, i also have to purchase strong pain killers, often illegally, and therefore incredibly expensive. this is one of the main reasons as to why gofundme is so important to me.
and for those of you thinking, "why don't you find a job?", there are two answers: 1, my disease is crippling, making most work available to people my age, impossible. and 2, employers simply won't hire me, a disabled person. although employers never explicitly say "no disabled people", in my own personal experience, it is obvious that most employers do not even consider hiring people with disabilities. for example, why on job application forms are we forced to state our disabilities, in detail? why would an employer need to know, especially before the interview process? i, and many other disabled people know EXACTLY why.
as some of you may know, i am an actor, and i often get jobs in the industry, this is my only form of employment, and most acting gigs are no pay, or shared profit. so this obviously doesn't help my financial situation all that much.
so for those asking, THAT is exactly why i created a gofundme. i didn't make this for easy handouts, or pity payments. i made this out of necessity. 
your constant outpourings of love and support mean everything to me. i appreciate every single donation, big or small. the amount isn't what i see when i check my fundraiser, i see love. i see acceptance. and i can never put into words how grateful i am for that.
i feel like this is already too long, so thank you if you've read this far. there is so much i could write here, but i wanted to keep it as concise as possible. however, below, is what i wrote back when i first created this gofundme, about what the past 8 years have been like for me.
i most definitely will add to this in the future though, but if you are interested in my life and my journey as a person, an actor, all whilst being disabled and dealing with crippling pain, you can follow me on my socials, i'm @grey_jarvis everywhere. i speak very openly on there about my physical health, and things i haven't even mentioned here, like what life is like living with psychosis. yes, i have both physical and mental illnesses. yep, it's hard out here folks.





when i was 10 i was in a car accident. the car i was in hit a tyre that had fallen off a truck,  causing it to spin out of control, and then flip into a ditch. my mom and i suffered whiplash, but we thought that was it. because of the accident, I obviously had to be thoroughly checked - that's when the doctors found something abnormal, and therefore sent me for more checks. it took a few months, and a lot of x rays for them to finally work out what was wrong with my spine. scheuermann's disease. 
at 10, I obviously didn't understand everything, and it definitely didn't sink in that there was something seriously wrong with me.
the doctors were very brief and didn't tell me, or my mom, much. we found most of what we know now, by researching.
it wasn't till i was 12 that I was referred to a hospital - something, which in my opinion, was a complete waste of time. i was always told of all the "options" available to help me have normal life, but i was never given the chance to use these said "options".
when i was first referred to the hospital, i was told that my spine would straighten as i grew, and therefore the pain and curved appearance of my back would go. it never did get better.  since then i have been waiting for the day i'd go to the hospital and they'd check me and tell me i was going to have a pain free future. but that day has never come, and i doubt it ever will.
when i was 13 i was offered a brace, which i would have had to wear constantly (apart from when I slept). i was told that it would help me significantly, and that it would stop the risk of my spine getting worse. however, in the end, i was never allowed to have one. the doctors constantly made excuses. they claimed that the brace would stunt my growth, and cause me to be deformed - there has been no reports that brace wear causes any of this. yet they refused to allow me to have one. some days i sit and think, maybe that would have helped, maybe i wouldn't be as bad as i am now if i'd been allowed to wear a brace. 
over the years the numerous nhs hospitals have let me down countless times, they constantly change and contradict what they tell me, and it has left me feeling so in the dark, and so helpless.
i was told that i had inherited the disease, then i was told that the car accident created a domino effect, and therefore caused it.
i was told that as i grew it would get easier and that the disease would correct itself, then i was told that i would be like this for life and I would just have to accept it.
since being 13 i have been promised spinal fusion, and corrective surgery, if my condition got worse - which it has. the nhs, now say that surgery is off the list, and that the only way i would be able to get it is to fund it myself. depending on the severity of the condition and the current state of my spine, the surgery could be upwards of £250,000. 
i had been under various hospitals for almost 5 years, until I was finally referred to the pain management team - something which i thought would be a huge step in the right direction, something i thought would help me cope, and feel somewhat normal again. i was so wrong. the past year, i have felt so hopeless and lost. nothing offered to me, i ever seem to be allowed to use. my parents and i have had to fund all treatment, which the nhs said they would give to me for free. non of the treatments have worked, therefore leaving my parents and myself at a loss. if you note the photo attached to this gofundme, you will see how many tablets i have to take weekly, around 20 a day.
in the doctor's own words I have "exhausted all treatments". at 17 i was first told that. 17. at 17, I had no other options. apparently this was and is it.
this is why i made this gofundme. 
for so long i have been worn down by those supposed to help me get better, and i want to be able to be free of them. i'm tired of being patronised and made to feel like this disease is my fault. so i am hoping to raise some money to help cover the costs of private treatment - in the hope that it will be different and i will be treated better. private treatment is incredibly expensive - especially when it involves the spine. i don't want my parents to have to pay for it, they have done so much for me as it is. and unfortunately i can't afford to pay for private treatment on my own, as i can't work, as you can hopefully understand.

i want to live a normal a life as possible, and be able to achieve my goals and fulfill my dreams. but i can't do any of that, living like i am now. the physical pain I am in 24/7 is unbearable and indescribable, not to mention the mental pain too. 

all funds raised will go towards private treatment, in the hope of finally getting somewhere with all of this. 
any donation is huge and would mean the world to me. even if you just read to the end of this, messy, chopped down "story", thank you. THANK you.

i hope this shed light into my situation. i tried to keep it as short as possible, and of course that means a lot is cut out. i haven't had the best life since finding out i had this disease, and it's been a long, hard road, not only for me, but for my family. i hope one day i will reach the end of this road and be able to find another, brighter one, to walk down.

thank you for reading, and if you have donated, i thank you from the bottom of my heart.

grey

Donations

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  • Victoria Burnett 
    • £5 
    • 1 mo
  • Anouk Rogge 
    • £5 
    • 2 mos
  • Anonymous 
    • £8 
    • 3 mos
  • Izabella Morgani 
    • £5 
    • 4 mos
  • Jillian Sheeler 
    • £10 
    • 5 mos
See all

Organizer

Grey Jarvis 
Organizer
Newhey, North West England, United Kingdom
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