A grieving family is raising awareness about a rare condition to honour a “wonderful and much-loved” Aberdeenshire woman who died last month.
Susan Rhodes, of Alford, and her daughter, Lois, are appealing for donations to support people who suffer from chronic and incurable pain condition fibromyalgia.
The 56-year-old started the fundraiser for Fibro friends United Scotland (FFU), after the unexpected death of her sister Ann Pearson, who had been living with the hidden illness for ten years.
“Always living life to the full”, Miss Pearson bravely managed her condition without ever letting her loved ones know about its debilitating impact.
Now, the family wants to raise awareness and support others suffering from fibromyalgia, to honour the “loving and giving” nature of Miss Pearson.
The 65-year-old, who had recently moved to Kincardine O’Neil to be closer to her family, went missing on November 22.
The police reported that a body had been found in the River Dee at the village the following day. The family do not know how she ended up in the water.
Speaking to the Press and Journal, the heartbroken family said that losing Miss Pearson still felt “surreal”, but they wanted to do “something good in her memory”.
Mrs Rhodes said: “For me I know I will never get over this, but I’ll have to learn to live with it.
“It’s tragic that she was in a place of such happiness and looking forward to moving in the house and all that’s been taken away from her, and we have no idea what happened and we never will.
“She didn’t come home for supper on the Sunday evening.
“It wasn’t until 9 o’clock that I said to my husband that I can’t wait any longer, I’m getting in my car and I’m going to check on her.
“Her car was out on the driveway, the lights were on in the house, the door was unlocked so I walked inside and it’s just a small cottage, but I searched that cottage three times calling her.
“We sat in my sister’s kitchen all night with no furniture, just an empty house with a couple of garden chairs.
“And it was about 9 o’clock in the morning the next day – there was a knock on the door, the police officers asked if we can talk in a private room and then they told us they had found a body in the river.
At that point my life changed forever.”
“All we can do is try and make Ann proud and that’s why we started talking about raising money in memoriam for her.”
The money raised will help fund FFU’s first community based pathway centre for fibromyalgia in Scotland, where they will be able to deliver hands on and digital outreach work.
The volunteer-led charity is the only point of contact for people suffering from the illness, which offers benefit and social advocacy, support meetings, early intervention info drop ins, as well as awareness talks and events.
Miss Pearson was an enthusiastic member of FFU’s support groups in Edinburgh and was known for her positivity and warm heart.
Mrs Rhodes describes her sister as “the most kind, thoughtful and fun aunty, sister, granny and friend”, who lived to help and support others.
She had unconditional love for her family and to all of her friends and colleagues, she was a “happy and bubbly” person with an “infectious giggle” that brought joy in everyone’s life.
“I’m so lucky and proud to have had her in my life and her loss is unimaginable for all of us”, Mrs Rhodes added.
“She spread her wings and wrapped them around those she loved and brought joy, love and a special kind of magic everywhere she went.
“I have wonderful people in my life, but she was unique – she was my favourite person in the whole world.
“We want her to be remembered as an amazing person, who had a sparkling personality, who encouraged many in their daily lives and who always put others before herself.
“We can’t bring Ann back, but we can do something good in her memory, raise awareness and help others.”
People can send donations on the fundraiser’s JustGiving page.
Fybromyalgia explained
It is estimated that almost one in 20 people in the UK could be affected by some degree of fibromyalgia.
Sometimes called fibromyalgia syndrome (FMS), the long-term health condition causes widespread pain, fatigue, headaches and difficulty with memory and concentration.
While research has suggested it could be linked to abnormal levels of chemicals in the brain and the way pain signals are sent through the body, no definitive cause has yet been identified.
Similarly, there is no known cure for the condition and treatment tends to involve painkillers, talking therapies, relaxation and exercise.
Fibromyalgia typically develops in someone between the ages of 30 and 50, and it is seven times more likely to affect a woman than a man.
In 2017 singer and actress Lady Gaga announced the cancellation of her European tour because of issues relating to fibromyalgia.
The same year she also released a behind-the-scenes Netflix documentary, Five Foot Two, exploring the impact her health was taking on her ability to perform.
At the time she said trauma and chronic pain “are keeping me from living a normal life.
“They are also keeping me from what I love the most in the world: Performing for my fans.”
Other high-profile fibromyalgia sufferers include Morgan Freeman, who said it causes “excruciating” pain in his left arm.
And BBC Radio 4 Desert Island Discs broadcaster Kirsty Young announced in 2018 she would be taking a break from the show because of the condition.
