Family of Annabelle, 4, raises awareness for Vascular Ehlers-Danlos (VEDS)
Annabelle’s family is thankful that she was diagnosed early. But, that is only half the battle. The four-year-old is at high risk for ruptures, arterial bleeding and other serious complications that may occur without notice. Her family is very supportive, and raises awareness for Vascular Ehlers-Danlos (VEDS).
“A BURY family are fighting to keep their four-year-old daughter safe — as the slightest knock could send her to hospital.
Annabelle Griffin suffers from a rare and life-threatening condition, which leaves her mum and dad Jared and Sarah Griffin facing a daily battle to balance a normal life with her well-being. The youngster was diagnosed with incurable genetic disease Vascular Ehlers-Danlos Syndrome (VEDS) at Christmas.
Mr Griffin said the hardest part of the condition is accepting something serious could happen to Annabelle at any time.
“It’s a ticking time bomb — it could happen tomorrow, or when she is in her 20s. We just don’t know,” he said. Parents , of Wilby Close, Brandlesholme, are keen to raise awareness of the condition, which is the most serious strain of EDS.
Mr Griffin, aged 40, is running the Greater Manchester 10k Run on May 26 with 15-year-old son Ryan and co-workers from the RRG Toyota group to fundraise for charity EDS UK.
He said the hardest part of the condition is accepting something serious could happen to Annabelle at any time.
“It’s a ticking time bomb – it could happen tomorrow, or when she is in her twenties. We just don’t know,” he said.
“No doctor can tell us her life expectancy and there are so many things we can’t do now.
“We had to get rid of our trampoline, and play centres are a big risk. Annabelle can’t go on theme park rides and shouldn’t fly, so foreign holidays are very limited.”
Facebook page Annabelle’s Challenge was launched by the family in January to share stories, advice and support for fellow sufferers and has had almost 1,000 likes to date.
“The support we’ve had is incredible and by spreading the word online we’re hoping to raise awareness,” said Mr Griffin.
“Annabelle has become a bit of a celebrity in the EDS world and loves the attention.”
Mr Griffin said his daughter visits Manchester Children’s Hospital an average of twice a month.
The family first noticed something was wrong when she was five months old and simple tasks like holding her legs down to change her nappy would leave hand print bruising.
“It’s tempting to wrap her up in cotton wool, but what sort of a life is that?” Mr Griffin added.
“We try to give her as much normality as possible. She is a happy child and wants to run around like normal, happy children do.”
Mum Sarah, aged 35, left her job to look after Annabelle full-time when months of testing revealed the devastating news of her diagnosis.
“She was three at the time and normally EDS isn’t picked up until much later,” Mr Griffin said.
“Even the consultant was disbelieving because it’s just so rare. In a way we feel blessed though; because many sufferers do not find out they have the condition until something really serious happens. At least we’ve been given a heads up.”
Lara Bloom, spokesperson for EDS UK said: “We are so grateful to the Griffin family for all they are doing to raise awareness.
May 2013 is EDS Awareness Month and we need to do what we can to make the invisible visible and improve the lives of people with Ehlers-Danlos Syndrome.”
For more information on Annabelle’s Challenge: visit www.facebook.com/AnnabellesChallenge; and to sponsor the Greater Manchester 10k runners go to www.justgiving.com/annabelleschallenge Facts About Vascular Ehlers-Danlos Syndrome – The most serious variation of Ehlers-Danlos Syndrome (EDS), Vascular Ehlers-Danlos Syndrome (VEDS) causes a weakening of the collagen in the tissues of the body and makes sufferers prone to spontaneous rupture of the organs or arteries.
- A torn artery can cause internal bleeding, stroke or shock and is the most common cause of death in sufferers.
- EDS is estimated to affect around 1 in 5,000 people, but VEDS is much rarer.
- Severe complications are rare in childhood but more than 80% of VEDS sufferers have experienced them by age 40.
- The syndrome is caused by mutations in the COL3A1 gene which makes type III proteins which provide structure and strength in skin, blood vessels and internal organs.
- Sufferers have thin, fragile, easily-bruised skin with clearly visible veins, hands and feet with an aged appearance and distinct facial features including protruding eyes, a thin nose and lips, sunken cheeks and a small chin.
- Other signs include hyper-mobility (unusually large range of movement) tearing of tendons and muscles, painfully swollen leg veins, lung collapse and slow wound healing.
- Infants with the condition may be born with hip dislocations and clubfoot.
- Rupture of the intestine is seen in 25-30% of sufferers and tearing of the uterus during pregnancy affects 2-3% of women.
- About half of all cases are inherited from a parent with the condition with the other half occur in people with no family history of the disorder.
- EDS awareness month is taking place throughout May. For more information on EDS go to www.edsawareness.com or www.EDNF.org.”
There are many activities planned for May EDS Awareness month across the US. See a list at https://www.chronicpainpartners.com/may-eds-awareness-activities/
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