Thanks for taking the time to visit my JustGiving page, take a few minutes out and let me tell you my story..
Amyloidosis? Never heard of it? Neither had I until now.
Sadly, last year my great Auntie Mal passed away from Amyloidosis. Nobody had really heard of Amyloidosis, not even her doctors or specialists.
Words can’t do justice as to why I want to tell you about my Auntie Mal, and why this page and day is so important to raise money and more importantly awareness of this disease.
I remember the day I was told, I was taking a usually trip to Tesco in the village, not far from me and received a call from my mum, Gillian.. my heart sank and I just couldn’t believe it, My Auntie Mal was gone.
No matter what the weather was like, Mal was the lady who got up every morning and did her daily adventures around the Wirral on her little bike. Whenever I saw her she was always in running gear or giving me tips on what exercises to do - she looked fabulous everyday and always bursted love, light, life and energy everyday. In fact she gave me a pair of her running shorts she didn’t use anymore and I still have them, I’m glad.
One day, my Aunty Mal just couldn’t bring herself to do what she would usually do, from being the bouncy, energy filled lady she was day in, day out it just happened so fast -
Any exertion would make her feel like she would pass out, she was short of breath, fatigued, couldn’t sleep and the symptoms got worse – pains in her joints, loss of weight, stomach pains, nausea, numbness in her hands and feet, heart palpitations, unable to concentrate, headaches, her skin was literally peeling off no matter how much moisturiser she put on. Just let me tell you she was a beautiful lady and her skin was always flawless.
After 70+ appointments over two years with symptoms getting worse - Auntie Mal on 18th July 2017 was told she was absolutely fine and that she had a lazy oesophagus which was why she was struggling to swallow and a cyst on her pancreas but they would send her to see a dietitian to help change her diet to high fat foods in an attempt to stop her losing weight and monitor the cyst, absolutely nothing to worry about - 'get out and live your life, build up your strength and you'll be fine!'.
Then on a Saturday morning a few weeks after being told she was fine, she received a letter from the hospital to say she had been diagnosed with Amyloidosis and she would be contacted with an appointment but if she wanted to understand more, the letter gave her a web address to google it!
This was the most devastating way for her to find out that she’s was ill and even more to be given a google page to find out what you had to look forward to!
Although My gorgeous Auntie Mals condition was not curable, it was treatable, she was picked up and chauffeur driven to the Royal Free Hospital in London (the only specialised place in England with a SAP scanner that can diagnose and come up with a treatment plan) and put up in a hotel for three days while they did tests.
Mally said she was going to do chemotherapy as she knew she wouldn't be cured but had been told they could extend her life, and that’s what she was about love, life and being happy and taking care of anyone she could.
Sadly, she never got the chance and became very poorly the following Friday and by the Saturday she was gone.
It was later found out that My lovely auntie passed away from an intra-abdominal and gastrointestinal haemorrhage…….cause by Amyloidosis.
I want to raise money for research but also so this disease is brought to the attention of medical professionals who need to understand that an illness is not just one test, one appointment but a whole person displaying symptoms.
Whatever you can do to help me bring awareness to this cause I will be eternally grateful.
Not only will this help the cause but it will be another memory to aid in keeping the memory of my great Aunty Mal living on. Words don’t describe how much it still feels unreal.
Her beautiful family she left behind are doing what she would have wanted them to do, keeping there chin up and being strong.
Love you always our girl, Aunty Mal 🌈❤️
People are asking about Amyloidosis and what we want is to raise awareness so this isn't a 'rare' disease - just because it wasn't diagnosed doesn't make it rare, it just means people are ignorant to it and diagnose it as something else!
Amyloidosis (am-uh-loi-DO-sis) is a disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is produced in your bone marrow and can be deposited in any tissue or organ.
Amyloidosis can affect different organs in different people, and there are different types of amyloid. Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and digestive tract. Severe amyloidosis can lead to life-threatening organ failure.
The specific cause of your condition depends on the type of amyloidosis you have.
There are several types of amyloidosis, including:
• AL amyloidosis (immunoglobulin light chain amyloidosis) is the most common type and can affect your heart, kidneys, skin, nerves and liver. Previously known as primary amyloidosis, AL amyloidosis occurs when your bone marrow produces abnormal antibodies that can't be broken down. The antibodies are deposited in your tissues as amyloid, interfering with normal function.
• AA amyloidosis mostly affects your kidneys but occasionally your digestive tract, liver or heart. It was previously known as secondary amyloidosis. It occurs along with chronic infectious or inflammatory diseases, such as rheumatoid arthritis or inflammatory bowel disease.
• Hereditary amyloidosis (familial amyloidosis) is an inherited disorder that often affects the liver, nerves, heart and kidneys. Many different types of gene abnormalities present at birth are associated with an increased risk of amyloid disease. The type and location of an amyloid gene abnormality can affect the risk of certain complications, the age at which symptoms first appear, and the way the disease progresses over time.
• Dialysis-related amyloidosis develops when proteins in blood are deposited in joints and tendons — causing pain, stiffness and fluid in the joints, as well as carpal tunnel syndrome. This type generally affects people on long-term dialysis.
There's no cure for amyloidosis. But treatments can help you manage your symptoms and limit the production of amyloid protein.
Signs and symptoms of Amyloidosis may include:
• Swelling of your ankles and legs
• Severe fatigue and weakness
• Shortness of breath
• Numbness, tingling or pain in your hands or feet, especially pain in your wrist (carpal tunnel syndrome)
• Diarrhoea, possibly with blood, or constipation
• Unintentional, significant weight loss
• An enlarged tongue
• Skin changes, such as thickening or easy bruising, and purplish patches around the eyes
• An irregular heartbeat
• Difficulty swallowing
Always see your GP and ask to be tested, don't be fobbed off x