May is Ehlers Danlos Syndrome (EDS) awareness month. Most people who have heard of the condition, and there are a few, see EDS as a condition whereby the skin is stretchy and joints tend to dislocate easily. However, there is more to EDS then these symptoms. Many patients with EDS suffer from Postural Orthostatic Tachycardia Syndrome (POTS). This condition is one of the most difficult sub-conditions to manage and with no specialists in Ireland, many people go undiagnosed. Although POTS is associated with EDS, many people suffer from the condition separately. Yvonne Evans spoke to two women this week about POTS, the effects and how difficult it is to get adequate treatment in Ireland.
POTS is a form of dysautonomia. The autonomic system is responsible for a host of bodily functions that we do not have to think about, such as sweating, breathing, digestive function, blood pressure and heart rate. The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute or more, or over 120 bpm, within the first 10 minutes of standing. POTS is often diagnosed using a tilt table test (TTT). Symptoms of the condition include dizziness, fatigue, fainting , difficulty exercising and palpitations, to name but a few.31 year old Lette Moloney was diagnosed with POTS in 2011 after 14 years of recurring symptoms including syncope (fainting). After collapsing at home and not regaining consciousness, she was admitted to hospital for one month. A TTT confirmed that Lette had the syndrome and was advised to increase her salt intake and exercise more.
Lette currently takes 18 pills a day and even still, she continues to faint. At the time of this interview, she is on day 10 of her latest hospital visit after suffering seizures which are also associated with POTS. She has yet to receive any tests to find out why she has started having seizures.
“I have a good team of medical professionals now, but I had to find them myself. There are no specialists in Ireland that I can find,” she said.
“The cocktails of drugs had been working. Last year I saw a big improvement in my health and I was feeling well enough to look for work. I then landed a job and it was perfect. I could work from home. But then my POTS started acting up again. I would have to put people on hold and be sick,” says Lette.
Last summer after an 11 day hospital visit, Lette’s consultant recommended that the 31 year old should stop working altogether.
Deirdre O’Grady from Macroom is the mother of two children, Kerri (14) and Aaron (8). Both of her children suffer greatly from POTS and are often hospitalised much to their mother’s frustration.
“I have been often told by doctors that fainting and low blood pressure are normal for children.Two years ago Aaron was diagnosed with EDS and POTS by Professor Grahame in London. I knew when he started walking that there was something wrong but no one listened. We have to travel to the UK to access treatment, the next trip will cost us around €2,000,” says the mother of two.
14 year old Kerri who is sitting her Junior Cert exams this year, often passes out and has been seen by four different hospitals here in Ireland.
“On a trip to Canada, Kerri began complaining about headaches and feeling nauseous. That never went away and after Aaron being diagnosed, I knew in my heart it was EDS and POTS too. She passes out very often, one day she didn’t regain consciousness so she was brought to hospital via ambulance,” explains Deirdre.
Both Lette and Deirdre have expressed their disappointment with the Irish health system. The treatment abroad scheme is available here in Ireland if patients can not access treatment in Ireland. However very few patients are granted the scheme and often spend thousands on each each visit to the UK. Lette has started an online Facebook support group for those who suffer from POTS and other forms of dysautonomia.
Lette is now confined to a wheelchair and Deirdre’s son often needs a wheelchair too.
“It is an invisible illness but it is there, there needs to be a better understanding of both conditions here in Ireland. Kerri’s school have been very accommodating to her condition but I still have to fight for Aaron in school,” says Deirdre.
For more information about POTS, see ‘Irish Dysautonomia Awareness’ on Facebook. Lette also writes a blog about life with POTS and EDS. See irishdysautonomia.wordpress.com.