Rebecca Griffiths
Rebecca Griffiths who suffers from Cyclical Vomiting Syndrome. Rebecca Griffiths/Just Giving

KEY POINTS

  • Rare condition causes ten-day vomiting spells.
  • Sufferer Rebecca Griffiths raising money to seek treatment in Germany.

A woman who is suffering from a rare condition which causes her to vomit blood dozens of times a day is raising funds to seek treatment in Germany.

Rebecca Griffiths, from Berkshire, has visited her local A&E department over 100 times since April 2017, where clinicians have been forced to sedate her in order to control her bouts of Cyclical Vomiting Syndrome.

The 30-year-old also has gastroparesis - which affects how food moves into the small intestine - Type 1 Diabetes, a rare immunodeficiency disorder, nerve damage and is registered blind. In addition, Griffiths has received treatment for temporary paralysis of her limbs, respiratory failure, pneumonia, acute kidney injury, and diabetic ketoacidosis.

For four years, Griffiths has dealt with CVS, which sparks attacks lasting up to five days. These bouts damage her oesophagus, and mean she cannot eat or drink. She has lost over 23kg since April, according to her Just Giving page.

Despite being seen by top specialists and spending a year as an inpatient, she was told that no other treatment options are available in the UK. Griffiths is now hoping to raise £40,000 so she can seek treatment in Germany.

"I don't know how you carry on really. You just sort of bounce from one week to the next," Griffiths told BBC News.

Rebecca Griffiths
Rebecca Griffiths has been told she cannot be treated in the UK. Rebecca Griffiths/Just Giving

"Good days or part days are few and far between, planning is a waste of time although she tries to see friends when she can, often pushing the limits and going straight into A&E from wherever she is," reads the message on her fundraising page. "This was the third consecutive Christmas and Boxing Day spent nearly entirely in hospital."

"When Rebecca is at home it's like walking a tightrope - severe dehydration daily means constant fluids pumping through day and night, constant medication, immunoglobulin infusions, constant monitoring, constant caring, constant nausea and constant effort to avoid her going back in. She so needs her independence again and some joie de vivre!" it added.

What is Cyclical Vomiting Syndrome?

The disorder is rare and mainly affects children, according to the NHS website. Unlike most cases of vomiting, CVS is not caused by an infection or illness. People with a family history of migraines are at slightly more risk of experiencing CVS.

What are the symptoms?

CVS can cause a person to vomit for hours or days at a time. They will then return to normal before the cycle repeats itself sometimes months later. It can last for decades.

The prodrome phase of CVS is marked by pale skin, nausea and intense sweating. This will give way to the vomiting phase, where a person will retch and vomit for up to 30 minutes five or six times a day. Such phases have been known to last ten days. A sufferer may not be able to move or respond, and can experience abdominal pain, diarrhoea, fever, dizziness, and headaches. Their eyes can be sensitive to the light, and they may drool or have the urge to spit.

Vomiting phases generally start at the same time of day and lasting for the same amount of time.

What causes it?

CVS is a little-understood condition and the cause is unknown, however it is believed to be linked to migraines. Some migraine medications have been known to ease CVS symptoms.

Episodes can be triggered by stress, infections, caffeine, hot weather, menstruation, motion sickness, foods containing MSG, and sleep deprivation.

How can it be treated?

Some medications are used to treat and prevent CVS, but those with severe vomiting may need hospital treatment. The condition generally stops by itself before adulthood, and half of those affected are under the age of three.