Story
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In early June 2017, my local cycling club will be joining me as I attempt to cycle the vertical height of Mount Everest, 29,029 feet, in order to raise funds for and awareness of Graves' Disease. Kentisbeare Oldies Cycling Society (KOCS), and I will be heading to the Alpes to complete the challenge!
My family have been severely affected by this auto-immune Thyroid disease over the last 5 years and both my daughter and wife have Graves' disease. If you read on, their stories and the symptoms of the disease are below.
Grace's Story
After 1 1/2 years of experiencing several different, unexplained symptoms, my 15 year old daughter was diagnosed with an auto immune thyroid disease called Graves' disease. She had repeated GP appointments and hospital referrals, and her symptoms, which consisted of numbness of the hands and face, pressing feelings in the skull and chronic migraines, were dismissed as only a migraine problem.
Then came the psychological symptoms....see the list below!
By the time we got a proper diagnosis she was very very poorly. After 2 years of treatment her thyroid was so diseased it had wrapped around her windpipe and had to be removed. She now lives a life dependant on medication in the form of thyroxin, to replace what the thyroid gland would naturally do.
4 1/2 years later and this invisible disease has taken the life she knew, the life she should of had and has changed her future. She's in a continuous battle to get up and stay on her feet, but with a good support system and an amazing determination she's making progress.
Michelle's story
2 1/2 years ago My wife started to experience similar physical symptoms. Even though Graves' disease is a genetic auto immune disease, she was repeatedly told that her symptoms were due to stress. Eventually, her thyroid levels went out of range, she insisted they test for the Graves' disease antibodies and unfortunately, it was confirmed that she too has the disease. She had unwittingly passed on the faulty gene to our daughter. For Michelle the symptoms are not as extreme as Graces' were but it still has a massive impact on her day to day life.
Although in this day and age it is not a life threatening condition if diagnosed and treated, this disease can be life changing. Early diagnosis is key to long term outcomes and research into different treatments may yet provide better lives for those affected in the future.
Below are the symptoms that some Graves' disease patients live with or have experienced and I would appreciate it if you would take time out of your day to open your mind and heart to learn a little about this invisible disease.
Many thanks.
Neil
PHYSICAL SYMPTOMS
Physical symptoms may include:
• Heart Palpitations
• Shortness of Breath
• Tremors
• Weight Loss/Gain
• Hot flashes
• Increased appetite and thirst
• Oily thin hair, Hair Loss
• Brittle Nails and Hair
• Gastrointestinal problems
• Oral Health/Dental problems - Enlarged tongue, Burning mouth syndrome
• Fluctuating blood sugar
• Muscle pain/weakness
• Tender and/or enlarged breasts
• Joint Pain
• Tingling in hands and feet
• Urinary incontinence/leakage - Loss of bladder control
• Low/high libido, Erectile dysfunction
• Dry skin, Oily Skin, Unusually smooth skin
• Stiff neck or neck pain for weeks
• Vitiligo – loss of skin pigmentation, white spots
• Edema, Fluid Retention, Swollen hands, feet and ankles
• Headaches, Migraines, Sinus infections/headaches
• Pretibial myxedema - skin condition commonly called "Orange Peel" because of the texture of the skin.
NEUROLOGICAL SYMPTOMS
Neurological and emotional symptoms may include:
• Fatigue
• Anxiety
• Impaired memory, confusion
• Mood swings, emotional instability
• Easy to cry - extremely sensitive
• Depression
• Diminished concentration, inattentiveness
• Excessive worry
• Graves Rage/Anger
• Insomnia
• Nervousness
• Brain fog/scatter brain
• Overreaction to stimuli
• Impulsive
• Panic Attacks
• Abnormal thinking, impaired judgment
• Can't think of simple words
• Mix up simple phrases
The British Thyroid Foundation is the charity I will be raising funds for as they provide support and research into Graves' Disease. Please use the link below if you would like to support the work they do. All donations are greatly appreciated and will go directly to the charity.
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