Brian’s world has been rocked by rare disease
No bridge too far in raising awareness into condition
Friends and family of a West Lothian man diagnosed with a rare disease that has turned his life upside down are raising money for more research.
Last year we told how Brian Girdwood had been diagnosed with amyloidosis after feeling seriously unwell but doctors struggled to pinpoint the cause.
Brian had to give to give up work and now walks with a stick. He felt as though he was “fading away” before he was finally diagnosed.
His family wants to raise awareness of the condition so nobody else has to go through what he has and so have organised a sponsored walk over the Forth Road Bridge on May 15 with players and coaches from Polbeth United Community Football Club.
The money they raise will go to Amyloidosis Awareness and the club, as Brian was a former coach there before he had to give up because of his condition.
His daughter Lauren explained: “There will be the 12 football boys and their three coaches who can walk together as they’re allowed to train together.
“There will also be about 10 family members including myself who will stick to our household groups to walk and a few of my dad’s closest friends!
“Dad’s having his good days and bad days, he’s started treatment but we’ve not really seen much difference. He’s still really struggling to walk any distance so he’s got himself a little mobility scooter which he will most probably use on the walk.”
Lauren continued: “My dad’s been battling a rare disease called amyloidosis for the last two years.
“Half way through lockdown we finally got a diagnosis of exactly what is wrong with him, however this is just the first step in a positive direction. We are currently waiting on medication that could potentially help him but not cure him.
“Over the last few months we’ve been thinking of how we can raise funds and awareness for both Amyloidosis Awareness and what my dad loves. My dad was adamant that whatever we do, he wants to also take part.
“We came to the decision that his football boys and him would do a sponsored walk over the Forth Road Bridge to raise money and split it between Amyloidosis Awareness and Polbeth United Community Football Club, the majority of it going towards Amyloidosis Awareness.
“My dad wants to give back to the amyloidosis medical staff who have helped him over the last few months since diagnosis.
“His 2010 football boys have kept him upbeat and also give funds towards further research into the disease and potentially find a cure so that no one else has to go through what he has for the last two years.”
Amyloidosis is the name for a group of rare, serious conditions caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body.
The build-up of amyloid protein deposits can make it difficult for the organs and tissues to work properly. Without treatment, this can lead to organ failure.
Symptoms depend on which tissues and organs are affected but can lead to heart and kidney failure.
Other symptoms include feeling lightheaded or fainting, particularly after standing or sitting up, numbness or a tingling feeling in the hands and feet, nausea, diarrhoea or constipation, carpal tunnel syndrome and bruising easily.
Brian, who stays in Polbeth, said he had to endure numerous MRI scans and blood tests before he was diagnosed. Tests would always came back clear, but during this his body was getting weaker and he lost a third of his body weight.
Lauren continued: “Over the last two years it’s been a tough and emotional ride for us all watching him deteriorate so drastically and rapidly, but especially for our mumma bear Laura.
“She has been a real life angel through all of this, taking on the role of caring for my dad while still looking after everyone else and working. All of us are so grateful for you.
“Laura would also like to raise awareness for the disease as it has just as much of an effect on the family as it does on the person who has it.
“Amyloidosis can be wrongly diagnosed or missed as it’s not widely known about.
“We all know our own bodies and when something isn’t right. If you have medical issues that no one can seem to diagnose, tests always coming back clear, however have symptoms like my dad, please research amyloidosis and speak to your GP.”
To donate visit http:// gf.me/u/y5v35b/