St Albans mum reveals: ‘EDS affects all of my family, but nobody knows what it is’
- Credit: Archant
When 37-year old Debbie Dennick suffered a ‘random’ set of medical problems as a child, she had no idea it would take more than three decades to get diagnosed with a rare genetic condition.
Now she is appealing for greater awareness of Ehlers-Danlos Syndromes (EDS) – which has just been renamed from Ehlers-Danlos Syndrome to reflect multiple types.
It is a lifelong, debilitating, and often life-threatening condition for which there is currently no cure. A defective gene in the connective tissues affects the production of collagen, which is the ‘glue’ that holds the body and organs together.
Debbie’s health declined suddenly when she was pregnant with her fourth child, causing severe breathlessness, worsened joint pains, stiffness, reduced mobility and increased fainting, chronic iron deficient anemia and severe allergic asthma. It meant she was forced to give up her job as an Ofsted-graded ‘outstanding’ childminder.
She had to stay on a respiratory ward for the latter part of her pregnancy and her baby daughter was born by elective Caesarian section at 35 weeks. Medics struggled to understand her unusual symptoms, which worsened after the delivery of her youngest child.
Now she is calling for people to sign a petition, pressuring the government to fund research into the disease, which is becoming increasingly diagnosed as professionals become aware of its criteria.
Every day Debbie is unwell with a complex set of medical issues, some of which also affect her four children in differing ways. These include very restricting gastric issues such as inability to swallow, nausea, reflux, abdominal pain, vomiting, food getting stuck, fatigue, breathing difficulties and memory and cognitive impairment. She also has pernicious anemia, multiple organ prolapse, multiple food allergies, peripheral neuropathy (nerve damage), lupus and two heart conditions.
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When she was diagnosed last year, aged 36, it became clear through genetic counselling and tests that various symptoms affecting her three daughters and son were all part of the same illness.
She said: “I am so grateful to my physiotherapist who realized it all sounded like Ehlers-Danlos Syndrome. She handed me a leaflet to take to my GP and specialists. I had never even heard of it before but I am so thankful for her knowledge and understanding of the condition and for being able to put all our family’s oddities together and make the connection.
“This is why I feel it is so important to try and raise awareness and that more professionals are trained and informed to recognize the symptoms and complex conditions that may be related to EDS.”
Debbie’s symptoms are managed by taking tablets including immune suppressants, steroids, motility agents and heart rate lowering medications. She also undergoes regular physiotherapy and hydrotherapy to help with pain and mobility.
She said: “It is extremely challenging facing multiple invisible illnesses. On the outside you look fine but despite trying to constantly fight back and remain positive, these are all life-altering debilitating chronic health conditions that affect you being able to function properly each day.
“Each one will flare at different times leaving me unable to walk around the house, eat solid food and at times unable to get out of bed.
“Very occasionally we are blessed with days when the symptoms are mild and those days are treasured, as to be able to enjoy normal family activities together is priceless.”
EDS affects her 17-year-old son Lewis, who has complex kidney and urology abnormalities, unexplained high blood pressure, heart conditions, blood glucose complications and neuro-gastro malfunctions.
Mia, six, was fed through feeding tubes since infancy, due to severe reflux disease, low weight gain and associated oral aversions. Although she can eat well now and reportedly cheerfully consumes more than her older sister, it was a very long slow painful process and she relies on feeding tubes at times, due to ongoing gastro-mobility issues.
Sophie, eight, and 15-year-old Kyla have reflux, food allergies, hypermobility, gastrointestinal issues and Kyla has Eosinophilic Oesophagitus - a chronic allergic/immune condition causing narrowing of the oesophagus.
The family, who lives in Colney Heath Lane, St Albans, is thankful for Debbie’s husband, who stops them from struggling at the worst of times.
Operations manager at a large software company Greg Dennick, 43, said: “Things obviously get hard when Debbie is really unwell but having a supportive employer and some really great older kids helps us to get by during the tough times.”
Ironically, it is particularly difficult for them to juggle all the medical appointments that the family requires, with having to attend many specialist consultations, physical therapies and ongoing doctor visits – all while suffering with ill health.
Debbie, a former Beaumont School pupil, added: “My wonderful husband is so loving and the kids are all totally amazing. Their bravery, courage and strength have taught us so much and that there is so much to be grateful and thankful for.”
The deadline for the petition is in May and you can see it here.