“Sweet Caroline” embarks on treatment plan after London clinic visit

June 19, 2017

A Crossmaglen mum-of-three who, for the last 25 years, has suffered the debilitating effects of a rare condition known as Ehlers Danlos Syndrome (EDS), has finally seen a specialist consultant in London – thanks to the incredible fundraising efforts of her local community.

Thirty six year old Caroline McClelland-Hughes has spent most of her life trying to get treatment for  the inherited connective tissue disorder that affects approximately 1 in 5,000 people.  A lack of knowledge about the condition among medical professionals here means many sufferers go undiagnosed for years or fail to receive necessary treatment from dedicated multi-disciplinary teams which are not available in Northern Ireland.

The incurable condition is extremely rare and affects the musculoskeletal system, the autonomic system, the connective tissues and collagen of the body, as well as vital organs. Caroline has only been diagnosed with EDS within the last year despite having suffered with the effects of the condition all her life. The busy mum struggles daily with the effects of the progressive condition suffering varying symptoms from frequent dislocations to mitral valve and organ prolapse.  She lives with chronic pain and fatigue and wears a permanent neck brace as a result of her cranial instability,  using a walking stick to help her get around and a wheelchair if she has to travel any distance.

Due to the lack of specialist medical help for EDS in Ireland, the local community have been fundraising in earnest to send Caroline to the private EDS clinic in London.  The Sweet Caroline EDS Fund, set up in March this year has been inundated with generous donations, facilitating her first specialist consultation in London, which she attended on June 6th.

Speaking to The Examiner upon her return, Caroline said it was a huge relief to finally speak to medical professionals who are experts in her condition.

“It was great to finally talk to doctors who weren’t scratching their heads about my illness and who could give me a comprehensive treatment plan based on a list of priority needs which was discussed during the appointment,” said Caroline.

“My consultant wants to try conservative treatment first which is a relief for me too, as with 3 young children to think about, surgery abroad and the recovery from it is not something I want to consider at the moment.

“I received a specialist scan of my head and neck in London which I wouldn’t be able to get at home.  It identified a chiari malformation – which basically means my cerebellum falls into my neck cavity and spinal cord which can block spinal fluid thus causing many of my symptoms.  Botox treatment in the back of my head may help to decompress the neck so I will be returning to London every 4 to 6 weeks for therapy and treatment.”

Caroline says she also received a huge amount of “simple information and advice” on how to deal with dislocations and manage some of her symptoms at home to avoid multiple hospital visits.  As part of her treatment plan, she has started medication which aims to help with the frequent dislocations she suffers and her London consultants will liaise with her doctors at home to enable Caroline to be treated as much as possible at home.

The brave mum’s visit to London also led to her first face- to – face meeting with a fellow EDS sufferer –  a lady from Blackrock in Dublin and she is also in contact with a mum from Lislea who also suffers from the condition.

“It really helps to speak to other EDS sufferers and to be in contact with another mum with the condition will help us both as we are in the same situation, trying to manage our illness whilst caring for young children too.”

To help pay for her continued treatment in London, the Sweet Caroline Fund committee will be ramping up their fundraising efforts, and once again, the Crossmaglen community are stepping up to the plate, with a slew of fundraising ideas in the pipeline, including a sponsored cycle and a marathon.

Local businessman, Gerard McMonagle has also offered to donate part of the annual Truck Run proceeds to Caroline’s fund, a gesture she is extremely grateful for.

Displaying her usual positive outlook, Caroline says “the only way is up from here” and extended her thanks to everyone who has donated to her fundraising campaign so far, urging everyone to continue to support her as she embarks on a prolonged treatment plan in the hope of regaining some semblance of a normal life for her and her family.