Rhys Holmes is a young man who has been affected by numerous health issues from a young age. This has affected his life in so many ways. His main condition today is a rare condition called superficial siderosis. Since 2015 he has had 24 operations, mostly neurosurgical procedures.
“I also suffer from hydrocephalus, and I've got an immune deficiency, pan-hypogammaglobulinemia, which is where I don't produce antibodies. I guess I don't really consider hydrocephalus and the immune deficiency an issue because I'm constantly hounded by superficial siderosis symptoms, but all three of the conditions could contribute to fatigue. I suffer from chronic pain and headaches. I'm completely deaf and using a cochlear implant and my mobility is severely affected. It's relentless really, the stuff I have to do to keep my condition at bay. I struggle massively because it's my brain and it can affect any part of my body. I get frustrated because, I feel like in my head, I'm all there and I want to do things, but I physically just can't.”
Adaptions have been needed to help him get around the property he now lives in with his parents. Grab rails and handles have been a necessity for his mobility. All of the adaptations have been funded by the family.
Rhys spends a lot of time travelling to and from appointments. With appointments in Cardiff and locally in Newport, including physiotherapy, pain management, neurology and immune appointments. From March this year, he’s had to travel from South Wales to London almost weekly for hospital appointments. This is a great cost to himself and his parents who help support him. A lot of the appointments in London were for his cochlear implant.
“I had pre-op assessments. It was nearly every week from the end of March up until the middle of June. It was quite a lot of travelling around and obviously, the cost of petrol going up, it’s a huge expense. Alongside it costing a fortune, my parents have to book time off work to come down with me. Then there are the congestion charges on top for the cars and parking. Parking is so expensive. There's no specific car park for the hospital. Some have disabled bays, but you struggle to have them booked because it's that busy. There's really a few outside because it's just a hospital in the middle of a city centre.”
Rhys does have a mobility car but it's currently off the road due to an accident earlier on in the year. This is adding to his outgoings “My mother and I were coming back from a rare conference and there was a tire on the road in a different lane, a car hit the tire and it catapulted it into the front of my car in our lane, so the front of the car is damaged. We're still waiting. Everything's so slow with insurance at the moment.”
With Rhys’ mobility issues, public transport to and from London would not work, nor would it work out cheaper with the expensive cost of rail tickets.
Besides the travel and expenses that come with the car and essential appointments, Rhys spends money on supplements that help his condition and physiotherapy. “I have to exercise every day and do specific physio exercises. Otherwise, I can't walk, then I'm back to square one. I go to physio once a week and they've got the virtual treadmill to test my gait, I basically had to learn to walk again because I was wheelchair-bound for a while. Where we live now there just happened to be a physiotherapist centre around the corner. We had to pay privately for it because it wasn't offered on the NHS. That's another cost that adds up.”
A further expense that is necessary for Rhys is his diet and for him to take supplements to help manage his condition. “I have to eat a specific diet and avoid certain foods that upset my stomach. I try to eat as healthily as possible and try and get a lot of fibre in my diet. Eating healthy is more expensive. Then I take a lot of supplements, which are antioxidants. The hope is to take them to slow the condition down, after I’d spoken to the professor in London who said it's a good idea to take them because we don't know it could potentially help, but they won't cause any harm. I'm involved with a charity in America for my condition and we're looking to do a trial with these antioxidants to see the effects on them.” As anyone who lives with a rare condition and daily pain, looking for help to help soothe and control symptoms is always a priority.
Rhys's social life had deteriorated alongside his health over the years, but he now hopes to be able to build that up again with the help of his cochlear implant and good friends. Although he doesn’t drink alcohol due to his condition, he enjoys going to the pub to be social and take part in the pub quizzes. A social life is important for everyone and being a young man having the connections to go out and enjoy life, to maintain his mental health, is a priority. Unfortunately, due to the current financial situation, it will add to his financial burden. “I'm excited to go out again with my friends. I think it's the case that I have to rely on other people, like my friends, to pick me up. It's not too bad doing it maybe once a month. I couldn't physically go out like I used to do at all, there's no way I could do it.”
With his implant, he is adjusting again to hearing and has the option now of using technology that will help him immensely. A large purchase recently was his phone upgrade. Having done some research online he found his latest device would be perfect and work in conjunction with his hearing now.
“My new phone sounded fantastic, so I purchased it. I had to pay a lot more for the new contract. I was only paying £15 pounds a month for my phone previously but now it’s jumped to over £40, but it's worth it for me because it gives me more accessibility. It's things like that, that shouldn't cost people that need them, or it should be subsidised heavily for people that need the accessibility.”
Prior to this, he had to rely on his parents to make phone calls and deal with all telephone requirements. His new device and implants have gone a long way to improving his day-to-day life but there are times when he still has to rely on his parents for phone calls in certain cases, as he can't hear automated messages and certain people are difficult to understand with the implant.
Rhys says he would be lost without his parents helping him out fully with support, including financial support. Being unable to work and relying on a small benefit there is a lot of financial strain on him with little to no outside help. Currently, in the UK, there is no charity or organisation for Rhys’ condition, but he hopes to build one here working in conjunction with a charity in the USA and a local MP. “I'm involved with the American charity and the hope is to get set up over here. I've been liaising with people over here and my MP as well to work with the Charity Commission to try and get something set up over here because I want to help other people like me. I know I'm in a bad way but there are people worse off than me, and I just feel like with my experiences I can help them out.”
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Superficial Siderosis
Infratentorial superficial siderosis, type 1 (classical) (iSS), or superficial siderosis of the central nervous system, is a profoundly disabling degenerative subvariant of superficial siderosis affecting the brain and spinal cord. iSS affects all races, ethnicities, and genders, with onset manifesting at any age.
To learn more about superficial siderosis, click here.
Source: https://livingwithss.com
LIVING WITH Superficial Siderosis
livingwithss.com is the digital magazine publication of the SSRA, your trusted companion in navigating Superficial Siderosis. They are a dedicated community of patients, caregivers, and friends committed to providing the latest medical information, sharing personal stories, and offering a platform for connection and support. Their mission is to empower everyone affected by this ultra-rare neurodegenerative disorder.
To learn more about Living with Superficial Siderosis, click here.
Source: https://livingwithss.com
The Superficial Siderosis Research Alliance (SSRA)
The Superficial Siderosis Research Alliance (SSRA) is a volunteer organisation run by patients, caregivers, and friends, dedicated to raising awareness, supporting medical research, and providing resources for those affected by this ultra-rare neurodegenerative disorder. Their commitment to transparency, patient privacy, and sharing up-to-date, approved medical information sets us apart.
To learn more about the Superficial Siderosis Research Alliance (SSRA), click here.
Source: https://livingwithss.com