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Our Superficial Siderosis Community: Meet Rhys Holmes

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Meet Rhys Holmes

 

Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished lead guitarist and background vocalist, Rhys followed his dream of hitting the road. He spent time traveling through London in a van with fellow bandmate Nick Byrne while working for a supermarket.

In 1998, when Rhys was only eight, he went through surgery to remove a benign brain tumor. Other than fighting off a bout of meningitis post surgery he returned to school and happily resumed his passion as an avid footballer playing for his local club, Cardiff Soccer School of Excellence and Newport Schoolboys.

When symptoms returned in 2001 Rhys was diagnosed with hydrocephalus. His surgeon inserted a VP shunt which led to multiple surgeries during the next four years. His doctor informed his dad he would have to give up football. The news devastated Rhys so his father gave him a guitar hoping a new hobby would soften the blow.

rhysRhys found his way to an after-school music program run by drummer Bob Richards (Asia, AC/DC). In 2008 he entered Glamorgan University in Cardiff, but with repeated fights with bacterial meningitis and pneumonia continually interrupting his courses he left university to work full time. 2010 found him balancing a promotion to a supervisor with Asda Supermarket and playing gigs with the band.

While watching Lord Of The Rings with his girlfriend in mid-2013, he noticed he didn’t hear well. A visit to an audiologist revealed bilateral hearing loss and his first recommendation of hearing aids. He took a new position with Admiral Car Insurance as a claims handler and life was uneventful until September 2015. A pain in the right-hand side of his head and screeching in his right ear woke him. His shunt had become blocked.

Rhys lost his right ear hearing early in 2016. His physicians were baffled as to the cause. His employer moved him from claims to an administration position to accommodate his hearing loss. A lumbar puncture and MRI in October 2016 revealed superficial siderosis. Double vision, gait, and balance symptoms joined hearing loss problems. In early 2017 Rhys began iron chelation therapy.

May 2017 his shunt had blocked again. New headaches after this surgery were found to be caused by intracranial hypotension. To make matters worse, he was diagnosed with the rare immunodeficiency, panhypogammaglobulinemia. He now requires weekly immunoglobulin.

Once I am in a decent state of health I plan to take up writing as I enjoy it and I can still do it even with all of these disabling factors.

During a late 2017 attempt to close a pseudomeningocele left by the first tumor surgery his surgeon was able to identify and repair two blood vessels suspected of causing the superficial siderosis. He returned for another surgery in March 2018 when an anti-siphon device was added to his shunt in hopes of controlling his intracranial hypotension. In April 2018 Rhys lost his position with Admiral Insurance.

breaking silenceRhys and former bandmate Nick Byrne, owner of The Dragonflii in Pontypool have organized an upcoming fundraiser, Breaking The Sound Of Silence A Benefit For the Sufferers of Superficial Siderosis. Donations of £5 will be collected on entry. The lineup includes favorite bands Holoson, Awakening Savannah, KASIA, and Vulturez.

Rhys now spends his days going to doctor appointments, exercising, rebuilding his strength and advocating for superficial siderosis education. He recently attended a medical student seminar with his neurologist where he explained his diagnosis while demonstrating some of the effects of this rare disease. He has become very interested in superficial siderosis and is continually looking for ways to not only help himself but offer assistance to others.

 

 

 

 

Rhys Holmes is a former musician, data analyst, shop assistant and childhood footballer. In his spare time, he enjoys researching Superficial Siderosis, writing, and watching his favorite football team Liverpool FC. Follow Rhys on Twitter @RhysHolmes

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