Recognize Cyclical Vomiting Syndrome as a disability.
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Cyclic vomiting syndrome, or cyclical vomiting syndrome, (CVS) is a chronic functional condition of unknown cause characterized by recurring attacks of intense nausea, vomiting, and sometimes abdominal pain, headaches, or migraines and prostration along with many other symptoms with no apparent cause. Please see the link below for in depth information on what CVS really is. Cyclical Vomiting Syndrome (CVS) is thought to affect 2% of the population.
Our daughter is a sufferer of this condition, but more recently she has become plagued with IBS/irregular and slowed peristalsis which is excruciating for her and exacerbates her CVS, it has overcome our life. We have been struggling with this since she was 13 months old. While we did not receive a formal diagnosis of what was wrong until 2015 (aged 6 yrs) when her school attendance dropped to 71 percent. We endured years prior being told there was nothing physically wrong with her, she was simply just prone to stomach upset and we were being overly cautious, paranoid, hysterical and neurotic parents every time she would have an episode as it required either being taken to hospital or to see a GP and the episodes would advance through it’s phases rapidly. Now at age 9 she is having as patterned 19-24 episodes in a year, resulting in missing up to 33 days a year of school, and she is symptomatic almost every other day which means she sometimes incapable of completing a full day of school.
Having been left with no answers, no help and no support for our daughter, we decided to take a pro active stance after we moved house to an entirely new area. I researched and googled until the early hours for months and came across the CVSA Nordic website. It soon became very clear that this was possibly what was wrong with daughter. We followed the advice on the website and started keeping episode diaries. These listed what she had been doing up to 24hrs prior to the episode, what she had to eat, how many hours sleep she had, what symptoms she was presenting with and how long the episode lasted. We did this for a few years and then showed our new GP who has been an amazing source of support and strength to us. It was then “suspected” she had CVS, referred to the Paed team at the hospital and it was confirmed, diagnosed. You can read what this is like for my daughter below.
No two sufferers of CVS are the same and cases can not be treated the same. CVS has no known cause, it has no cure. It can only ever be managed the best it can. We know that in our daughters case there are identified triggers that set her episodes off, normal every day activities that we all take for granted, we have tried many different techniques and drug therapies to minimise exposure and reduce episodes but we can not stop exposure to life, all attempts to reduce frequency have failed and while we have treatment to administer to stop vomiting during an episode it does not remove the additional symptoms that come with it, so we have now got a default setting that our daughter has to be sedated in the hope that deep sleep resets her system. Her episodes are very different from lifestyle activated episodes through physical exertion, allergies, sleep deprivation, exhaustion, positive and negative excitement etc to episodes activated from viral or bacterial infections. The latter are much more severe and much worse usually resulting in hospitalisation. Normally hospitalisation is counter therapeutic and our daughter requires much more extensive home care than other children the same age who do not have a disability or other chronic conditions. She also has dental issues that have been picked up by her dentist. CVS affects the mouth and teeth in similar ways to diseases associated with chronic vomiting, such as bulimia, and can cause tooth sensitivity and erosion, cavities, periodontal (gum) disease, dry mouth, salivary gland enlargement and trauma to the oral tissue. Our daughter can not enjoy the normal activities that children her age or even her younger sibling can with sports, she is unable to do any kind of sport activity. While her class is partaking in the normal exercise regime at school, hers is altered and she is excluded due to the limitations CVS inflicts upon her.
In the UK it is not recognised as a disability. This condition can leave a sufferer very sick and vomiting for hours, or even days, at a time. It can be a frightening condition that affects everyday life.
I am asking the Department for Work and Pensions of the UK Government to recognize this debilitating condition as what it is, a disability. It disables my daughter in almost all aspects of her life. Adult sufferers and caretakers struggle to hold down a job, due to absences, which is an added strain and stress on them, Where am I going to find the money to pay my bills as I haven't been able to work this month??
If CVS was recognised as a disability, quality of life would be better. Sufferers and caretakers would have a usual, regular income and wouldn't have the stress of not being able to work or constantly being fired.
Please sign and share my petition to urge the Government to recognise CVS as a disability, so that sufferers like my daughter can get the support they need. There is no mention of CVS in any of DWP decision makers guidance. I feel it were to be listed and recognised properly as the disabling and debilitating condition is truly is, sufferers who are so struck down with this condition that it does impact and impair their daily lives, when they do make a claim for help it would lessen the risk to the stressors of having to go through the lengthy processes of Mandatory Reconsiderations, Appeals, Tribunals. All which are triggers points leading to exacerbating episodes. The DWP would become more educated, understanding and knowledgeable of what this disease really is.
Some cases are so severe that a sufferer requires immediate hospitalisation, for Iv fluids (dangerous dehydration) and Iv pain relief. A sufferer can be left bed ridden or hospitalised for days. The number of "attacks" can vary, as can the space between attacks. Between attacks, after recovery, a sufferer can often feel fine and sometimes the sufferer is symptomatic most the time in between due to the cycles not being broke.
During an attack a sufferer can experience retching and vomiting that often starts in the night or early morning
•vomiting up to five or six times rapid pace in 15 minutes, and up to 20+ times in 60 minutes, for up to 10 days
•may not be able to move or respond
•other possible symptoms:
- sensitivity to light,
- extremely pale skin,
- drowsiness or unresponsiveness,
- drooling or spitting excess saliva, and many more
Not only do we need recognition of this disease as a disability but we need more awareness of the condition. Right now there is no cure, just management. I believe that this is because its not commonly known about. CVS research is still in its infancy
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