London — We are saddened by the premature death of Dorian Thomson, 41, a former male model and art director whose suicide was blamed on unrelenting dental pain due to EDS.
The Daily Mail reports that Mr. Thompson's orthdontic treatment of six years ago, triggered pain so severe that he was unable to eat or sleep properly.
According to the Daily Mail:
He was in 'more pain than anyone could ever conceive of for about six years', he added, and 'in addition to his tooth ache from every single tooth he suffered from Temporomandibular joint disorder. It meant that there was no support from his jaw and the jaw joint had been worn down.'
By the time of his death, he said, Mr Thomson had become antisocial thanks to 'the onslaught of pain'.
He described his body as feeling like it 'had pins in it' when he walked, which would cause 'grievous amounts of pain'.
He told the inquest Mr Thomson, who turned on the Regent Street Christmas lights in 1999, had spoken about contacting Swiss assisted dying group Dignitas.
'Given the degenerative nature of his condition and the complete lack of help that he was being given, he wanted to know that there was a way out,' said Mr Illingworth.
Recording a verdict of hanging, adding that Mr Thomson killed himself 'while his mind was disturbed', Coroner Dr William Dolman said he was 'a man suffering from a number of serious medical problems.
He had the genetic disorder EDS and the orthodontic treatments had not been successful.
'He was a man in severe, constant pain for many years... He clearly had been a highly successful, outgoing man, but retreated into himself... he had issues with the unsuccessful treatment he had with orthodontics.'
He added: 'This intelligent man knew he had come to the end of his tether. A man with no way out of his predicament but to end his life.'
Mr Illingworth said outside court Mr Thomson had undergone treatment to realign his jaw.
He said: 'The EDS was triggered by orthodontic treatment and when that went wrong the orthodontist dumped him and refused to deal with him anymore. Other orthodontists were refusing to treat him and his condition deteriorated.
'We believe there is systematic failure in the knowledge of EDS. We have to improve knowledge of it and get testing for it before orthodontistry or any form of surgery. That was Dorian's wish, that nobody should ever go through it again.'
His partner of 12 years, Susan Millard, 48, added: 'I want to raise awareness of this. If any person can be prevented from going through what he went through it is worth it.'This story highlights the need for greater awareness within the medical and dental communities to the challenges caused by Ehler-Danlos.
7 comments:
I can certainly understand Dorian's feelings of no hope. My daughter is 18 and is in incredible pain from EDS. It feels like there is no hope when she is at her worst and I don't know how long she can keep doing this. We're working with doctors, but her pain is certainly not managed.
I have a 17year old daughter, as well as a 12 year old son and my self,who struggles with the pain of EDS and the related conditions, as well as the problems the medications have caused. The underlying conditions treatments have done more harm than good. Like a lot of chronic pain victims, my kids fell into deep depressions at around age 10, between the physical pain, emotional pain (the loss of dreams, being bullied for being different, losing friends and family who don't understand how these things limit what we can do, or down right saying you're faking it. And doctors who have no idea, often they can't admit that THEY don't know therefor it doesn't exist. My son even had teachers who after they were shown his dx told him he was lying as he didn't seem in pain at school.) this I didn't find out till 2 months into summer. My daughter has missed most of high school which she lived, no dances, very few games, no prom. These type of things make the depression worse, in turn making the pain worse. Right now my son is off most of his lmeds so we can try to figure out what is going on Neuro wise. But since being schooled on line so we can deal with pain and sublaxations, although he is now going through puberty and the almost weekly migraines that make reading something he already has problems with all but impossible. But mentally he is much better. They both have had counseling during their depression, and still have times when it is needed. You may not be able to do much for her physical pain, but you being there, helping her and giving emotional support, standing by her, fighting by her side for her... That is doing more good than you know! And the internet has a lot to offer as far as finding something that might help, groups on facebook, especially local facebook pages can offer in person support groups, as well as doctor referals, finding doctors who are versed in EDS, different medical options, physical therapy and even dentistry. Tumbler also has a lot of people who share their own EDS struggles. There is also support out there for you as her mom and as a supporter and caregiver.
I have a 17year old daughter, as well as a 12 year old son and my self,who struggles with the pain of EDS and the related conditions, as well as the problems the medications have caused. The underlying conditions treatments have done more harm than good. Like a lot of chronic pain victims, my kids fell into deep depressions at around age 10, between the physical pain, emotional pain (the loss of dreams, being bullied for being different, losing friends and family who don't understand how these things limit what we can do, or down right saying you're faking it. And doctors who have no idea, often they can't admit that THEY don't know therefor it doesn't exist. My son even had teachers who after they were shown his dx told him he was lying as he didn't seem in pain at school.) this I didn't find out till 2 months into summer. My daughter has missed most of high school which she lived, no dances, very few games, no prom. These type of things make the depression worse, in turn making the pain worse. Right now my son is off most of his lmeds so we can try to figure out what is going on Neuro wise. But since being schooled on line so we can deal with pain and sublaxations, although he is now going through puberty and the almost weekly migraines that make reading something he already has problems with all but impossible. But mentally he is much better. They both have had counseling during their depression, and still have times when it is needed. You may not be able to do much for her physical pain, but you being there, helping her and giving emotional support, standing by her, fighting by her side for her... That is doing more good than you know! And the internet has a lot to offer as far as finding something that might help, groups on facebook, especially local facebook pages can offer in person support groups, as well as doctor referals, finding doctors who are versed in EDS, different medical options, physical therapy and even dentistry. Tumbler also has a lot of people who share their own EDS struggles. There is also support out there for you as her mom and as a supporter and caregiver.
RIP Dorian. Ive been there, any thing to end the pain. you poor soul. but you are at peace now. thank you for fighting as long as you did
This is so sad, but I understand it. I have EDS, & I'm not on any meds. I gave up on doctors. None of them knew anything about EDS except the geneticist, who couldn't give me any referrals. Suicide crosses my mind, although I wouldn't act on it. I see a shrink but he doesn't know the first thing about EDS. Several docs I've seen act like EDS is psychosomatic, but it's not. The pain is real, it's unrelenting, and it just gets worse. The hardest part for me is the nerve pain. My body is deteriorating from head to toe.
My heart breaks for his friends and family, but god this article SCARES me. It brings reality crashing in and reminds me that a chronic disorder truly can get worse with age. It is really scary after feeling first hand how quickly things can take a turn for the worst. Really truly scary. Stories like this make me even more focused on living for the now and in the moment because I truly have no clue what my body has in store for me ten years away... or even tomorrow.
I’m exactly where you’re at. If it wasn’t for my family I’d never see another doctor again. I have fibromyalgia and eds and tmj. I honestly think about death every day, was a A student, now I can’t take more than one class at a time. I get so scared thinking about my life stretching out in front of me, no help, no relief. They gave me antidepressants when I first started talking about the pain, which is very real scientifically proven physical pain. Right now I’m just drifting through every day, I still have something keeping me here, idk on top of that I have ptsd, It’s weird how some ppl have such huge burdens to carry, like my life just keeps getting objectively worse and I look around and kind of hate ppl who nothing ever happens to. Ive turned bitter and cynical, and Ive lost my ambition, that’s what I hate the most.
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