💙 my heart is heavy with this one 💙
I have consistent nervous breakdowns over knowing this is my life. But yet I know many have no idea about the things I'm about to tell you.
Cyclic vomiting syndrome itself is not truely life-threatening but the complications that it creates can be.
I'M BEGGING FOR HELP!!
They do not provide enough accessible treatment. For complications I face from this rare disease.
I am unable to keep a job as I cannot work during vomiting episodes. Lasting anywhere between hours to days. Not including the recovery time needed after the episode is finished.
IT IS DEBILITATING.
Workplaces refuse to hire me when accomodations are asked due to this disability making me "unreliable". If you don't tell your employer and you miss too much work, your let go for being "unreliable". Finding a workplace who will accommodate you and provide consistent wages ... is unobtainable.
Accessing proper insurance coverage needed to make this rare disease manageable is unobtainable due to the plethora of needs we require to have met. Even when on welfare or disability.
Those who are not able to manage the triggers are pushed out of the workforce and forced to fight to get disability. Often unable to obtain federal disability as it isn't "as bad as cancer" as I was told... even with my other plethora of diagnoses that made my doctor feel it was my best course of action.
Not only dose this rare disease have complications of dehydration, damage to the esophagus and tooth decay. Most with this disease also suffer from other conditions (comorbidities), particularly other functional issues. Some of the common functional comorbidities to CVS include migraine headache, chronic fatigue, irritable bowel, gastroparesis, depression, anxiety, POTS and/or other forms of dysautonomia as well as neuromuscular disease include intellectual disabilities, autism, seizures, and/or hypotonia. As well as mitochondria dysfunctions
Incase you don't know mitochondria dysfunctions means your body cannot efficiently turn sugar and oxygen into energy, so the cells do not work correctly. This can affect different parts of the body: the brain, kidneys, muscles, heart, eyes, ears, and others. Organ dysfunction can be a very real possibility. Organ failure is organ dysfunction to such a degree that normal homeostasis cannot be maintained without external clinical intervention.
I have been diagnosed with 8 and counting of the comorbidities. These comorbidities have their own comorbidities that have also been added to my list.
Many doctors are under educated on CVS. Often those with CVS are not properly diagnosed, even with symptoms at a young age.
Many doctors tell us to figure out our CVS triggers to manage the disease. In my case I have so many triggers due to my plethora of diagnoses/comorbidities that my CVS is incredibly difficult, even unrealistic to manage even with proper medical support. (So many overlapping, environmental, situational, medical, life triggers... so many triggers not on this list and still more unknown triggers)
THIS IS MY LIFE! THERE IS NO CURE.
They're are only underfunded small individual research/studies. They have not found a cure. We don't have proper support and thus we suffer. Look at this link ... the lack of information
https://rarediseases.info.nih.gov/diseases/6230/cyclic-vomiting-syndrome
I SUFFER.
My disadvantages have been continually coming to light. My realization I likely won't be able to achieve basic life milestones has been heartbreaking.
Medically assisted suicide is easily achievable even in even minor cases of CVS. While there is little to no support and even less accessibility.
What options do those with this disease have?
Suffer or give up ...
I'd also like to finally note the journey to diagnosis is horrendous. Doctors diagnose cyclic vomiting syndrome based on family and medical history, a physical exam, pattern of symptoms, and medical tests. Your doctor should perform medical tests to rule out other diseases and conditions that may cause nausea and vomiting.
-add on the factors of age, ethnicity, gender, life style, fashion choices, preconceived assumptions ... the list goes on ... the journey to diagnosis often feels unbearable-
If you have read this please comment, I need some validation.
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