Kilbeggan man's hope that US clinic can help his battle with rare disease

A Kilbeggan man has agreed this week to open up about the excruciating pain which is a 24/7 presence in his life since contracting what doctors and sufferers refer to as ‘The Suicide Disease’.

Declan Rogers, 52, who is originally from Rhode, County Offaly, has been diagnosed with a neurological condition called Complex Regional Pain Syndrome (CRPS).

“It’s just pure insomnia, exhausting, uncomfortable, embarrassing, depressing, and excruciating all rolled into one,” is how Declan describes a condition which is so painful that some fellow sufferers have described it as being akin to being burnt by acid.

“Medically speaking, it is the most painful disease known to man – rating higher than both childbirth and amputation on the McGill Pain Index,” Declan’s cousin, Mary Lynch told the Westmeath Examiner this week.

Declan consented to sharing his story after family members discovered there is a specialist US clinic which has been successfully helping CRPS sufferers. The clinic has agreed to take Declan as a patient, but without community help, it will be impossible for him and his family to meet the considerable cost of the 12 weeks of treatment involved.

As a result, his cousin Mary, her brother Philip Lynch and Philip’s wife Sarah have launched a GoFundMe appeal in a bid to raise €80,000 to cover the costs that lie ahead.

“It was just when Declan thought there was no hope that we found The Spero Clinic, a holistic medical treatment centre in Arkansas, USA, led by well-known quantum neurology nerve rehabilitation specialist Dr Katinka van der Merwe,” says Mary.

Declan is booked in to start treatment with Dr van der Merwe from April 15. The estimated cost of the treatment is $50,000 – but since the treatment will involve four days in the clinic and three days out, Declan will also need to fund accommodation and living expenses for the three months, as well as travel costs.

Declan’s CRPS story began around 2020, when he received the devastating news from doctors that the pain he had begun suffering was going to be a permanent feature of his life.

It has become a heavy burden to bear for Declan – but also for his wife Helen, and his son, Declan Jnr.

It has also been hard for Mary and Philip who are close to Declan, who was “best pals” with his uncle, their late father, Tom Lynch. Declan and Tom enjoyed golfing together – and golf remains an interest in Declan’s life: “He took part in many sports throughout his life, but his main one is golf, and he is actually vice-captain of New Forest Golf Club,” says Mary, adding that despite his pain, Declan still helps out a lot at New Forest.

“It’s what keeps him going,” she said.

In the past, Declan also played with Kilbeggan Shamrocks.

“Many people, including Declan, who have CRPS describe it as feeling like they are being burned alive,” says Mary.

Declan put pen to paper to try and describe the rare disorder: “It is just non-stop throbbing pain and exhausting,” he wrote. “I thought I knew what pain was one time years ago when I had a bad cramp and sharp pain down my leg. I thought I was going to collapse. I would have put it maybe a seven or eight, tops, on a scale of one to 10. But no, that wasn’t pain at all. Think of the worst pain you ever had being a 10, and then imagine having that pain continuous every day non-stop, like a pure throbbing, pinching, burning pain, and then triple it.”

Declan said that some people advise that sufferers “just try and get through each day”.

“But,” he says, “in my mind I just try and get through each hour.”

He admitted that he is slow to let people know what he is actually enduring: “Anyone who knows me will know that I am always in good form. That is because I don’t want people to know what is really going on in my world, also I don’t want to bore them with my problems, and I just get on with it and keep to myself.”

He continued: “People ask me, ‘well how are you?’ I just smile and reply, ‘ahh sure I’m grand…’. But I’m not really… I smile and I love meeting people and having a chat, I know I ramble on, but that’s just because my mind is all over the place, because I’m trying to manage the excruciating burning pulse throbbing pain. I am very strong mentally, thank goodness.”

He quotes the words of the tragic singer Jane Marczewski, known as ‘Nightbirde’, who died at 31 years of age in 2022 after battling cancer for four years: “It is so important that everyone knows that I am so much more than the bad things that happen to me.”

Declan says he loves helping people, and lives by four principles each day: 1, Always wake up and be in good humour; 2, Do as many good deeds as you can in a day; 3, Make someone laugh; and 4, Make someone smile by putting them in good humour.

Mary concludes by stating that one of the reasons why she, her brother and sister-in-law have thrown their energies into this drive is that just six months after the death of their father, their sister, Lelia, was diagnosed with breast cancer. The family researched intensively to get a better understanding of cancer, and to learn what to do to keep Lelia’s immune system healthy as she battled the condition – and they made it their business to raise awareness of breast cancer.

“Lelia is doing well and is cancer-free as of now and still going strong. She is still being monitored – but like that, if we didn’t do the research we wouldn’t have had the understanding of the disease.

“It’s important for any one that develops any type of disease to research it and know there is hope and light at the end of it, please God,” she said.

• You can support the effort on Gofundme.com.