Clodagh and Siobhan’s Story

Clodagh and Siobhán Laffey are two sisters from Curragha Co. Meath. In September 2014 at the age of 25 (Siobhán) and 20 (Clodagh) they were both diagnosed with Chronic Lyme Disease and multiple systemic infections. This was following a year long battle trying to determine the reason for Clodagh’s rapidly declining health following a summer working at a non-profit summer camp for disadvantaged youth in Maine, USA. Siobhán had worked at the same camp for the previous 6 summers and following the summer of 2009 had also experienced a deterioration in her health with seemly disjointed symptoms that specialists were unable to determine a cause for. She was diagnosed with Fibromyalgia in 2011. It was only when Clodagh was experiencing severe ill health that a friend’s mother, a nurse, mentioned that she should be tested for Lyme Disease and so Clodagh and Siobhán’s parents began researching this illness that they had never heard of.

Despite being referred to a number of specialists in neurology and infectious diseases no doctor could shed any light on why a previously active and healthy 20 year old was suddenly bed bound and experiencing severe neurological episodes. While researching Chronic Lyme Disease their parents recognised many of the symptoms their daughters suffered with listed as symptoms of this disease and began fighting to get the girls tested in Ireland. They were met with reluctance from doctors to carry out this test but when Clodagh was eventually tested using the Irish two tier system (ELISA and Western Blot) they were told she had received a “false positive” on the test and did not have Lyme Disease. Having researched this system of testing Clodagh and Siobhán’s parents were aware that over 50% of people test negative for Lyme Disease using the two tier system. As a result they looked further afield to countries such as America and Germany where there were labs and clinics that specialised in testing, diagnosing and treating tick borne diseases such as Lyme Disease.

Clodagh and Siobhán attended one of these clinics in Germany where they were diagnosed with Chronic Lyme Disease and multiple systemic infections and began receiving a customised treatment programme to fight their specific infections and symptoms. This disease affects every organ and system in their body and some of the symptoms they experience include; chronic fatigue, inflammation of the nervous system causing burning, numbness, pins and needles and loss of power in their limbs, joint inflammation causing pain and swelling, migraines and headaches, insomnia, muscular pain and wastage, cognitive dysfunction causing difficulties with memory, retaining and processing information, speaking and remembering words, sensory issues with light and sound, nausea, vomiting and food sensitivities, chronic pain and severely suppressed immune systems so they are very susceptible to picking up common infections that they then struggle to fight.

Over the last 2 and a half years the girls have made steady progress with their treatment, taking over 55 tablets daily along with completing holistic treatments to support their immune system and attending the clinic in Germany every 3 months (approx.) to have blood tests done and adjust their treatment as required. It’s become apparent over this time that the infections are worse than initially thought and very complex in nature which makes treatment with oral antibiotics quite challenging. After coming down with a severe case of the vomiting bug in early January 2017 both girls had to stop their medication to give their gut time to heal. Siobhán experienced a lot of difficulty in this regard and has been unable to successfully resume her medication due to severe side effects. Clodagh has managed in recent weeks to resume some of the medications but without being able to carry out the entire programme will not reap the benefit. As such their consultant has determined that the only option going forward is to receive IV treatment. The girls and their family investigated doing this in Ireland but were unsuccessful in finding a clinic willing to administer the treatment. As such they must travel to their clinic in Germany where they will receive IV treatment for 2-3 months. This will involve massive costs for the family with preliminary estimates amounting to €50,000 for the medical treatment.

Prior to becoming ill both girls were energetic, active, sporty and enjoyed being social and engaging with people. Playing camogie with their local team in Ratoath was a huge part of their lives and Clodagh also enjoyed rock climbing and Siobhán travelling and running. With this illness, they have lost these abilities. Often the energy required for socialising or meeting with people evades the girls so a visit from a friend is preferable, or on a good day, going out for lunch. It’s difficult as young women in their twenties to be house bound most of the time but they count themselves lucky for the close family and friends who take time to see them or invite them out. In the last few months they have both resumed working a few days to gain some normalcy in their lives but this often leaves them with little energy for anything else. However, they are very hopeful and upbeat and are cautiously optimistic that the IV treatment in Germany will get them back on the right track towards improving their health and eventually allowing them to re-engage with their “old lives”. They are hugely grateful for the support they have received from their community and friends and family over the last two and a half years. The Clodagh & Siobhán Laffey Trust was established in 2015 by family, friends and members of the community to establish a trust fund for the benefit of Clodagh and Siobhán in the context of their illness, to oversee fundraising and to administer funds for their treatment. The Trust is hoping to coordinate fundraising activities in the coming months to help the girls meet the costs of moving to Germany and receiving this vital treatment for the next 2-3months.

If you wish to support the girls and make a donation the bank details for the trust are as follows;
Clodagh & Siobhan Laffey Trust, AIB Ashbourne,
Sort Code: 93 23 96 ​A/C Number: 42768180
BIC: AIBKIE2D ​IBAN: IE46AIBK93239642768180.
Please also check out the Facebook Page and website for upcoming fundraising events!
Facebook: https://www.facebook.com/laffeylymedisease/
Website: https://clodaghandsiobhanlaffeytrust.ie/