You may find the full article here, but I will copy pasta the article for you to read anyhow.
A massive thank you to Yvonne Evans for doing the interview with both Deirdre O’Grady and myself. Much appreciated 🙂
Pots and pain
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.