A mother has spoken of the heartbreaking moment she heard her family say goodbye while she was frozen and unable to respond.
Sarah Saunders, 34, left doctors baffled as to why her body was failing her, starting with headaches and strange sensations of hot water running down her legs and spine.
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She claims she visited the doctor three times in a month but was ruled out because she was “overwhelmed” by being a new mother.
But when she lost feeling in her fingers, Sarah rushed to the hospital, where within hours she was unable to shake hands with doctors.
She then quickly lost the ability to walk, talk, move her arms and even blink.
Sarah, who lives in Peterborough and is married to Stephen, said: “The results of my blood tests suggested that my liver, heart and kidneys were under pressure and weren’t coping, but doctors still haven’t been able to find a reason for this.
“The doctors talked to me saying that my organs were not coping and that there was nothing they could do without knowing the cause.
“My family was with me and I could hear how devastated they were to hear this news, but I couldn’t comfort them, it was horrible.”
While Sarah was fully conscious but unable to communicate, doctors gathered her family at her bedside to tell them that things didn’t look right and that if it continued, she wouldn’t have long to live.
Sarah said: “My son was just 18 months old and I was desperate to tell him I loved him and give him a hug.”
Fortunately, a specialist consultant gave a life-saving diagnosis within hours.
It turned out that Sarah had Addison’s disease, which occurs when the adrenal glands stop working and producing enough of the hormones cortisol and aldosterone – which are essential for survival.
This causes symptoms of extreme exhaustion, loss of appetite, low blood pressure, dizziness, nausea, abdominal pain, bad mood, headaches, high temperature and more.
Sarah’s adrenal glands failed, which caused her to suffer paralysis.
Once she was diagnosed and received treatment, Sarah regained the use of her body.
Although she is no longer seriously ill after the ordeal 10 years ago, Sarah said her life is “unrecognizable” now.
For years, she took steroid medications that can cause side effects such as weight gain, muscle and bone weakness, diabetes, increased risk of infection, thinning skin and mental health problems.
Sarah said: “Before Addison I was very fit, I exercised daily, I loved full body workouts and 11 mile walks, I lived a very active lifestyle.
“Now I am weak and I have a caregiver who helps me with daily activities.
“I gained 15 stone from daily medication.
I was so looking forward to watching my son grow up and spending lots of vacations and fun times together.
Sara
“I feel like 10 years of my life have been taken away from me.
“I continue to feel frustrated because I’m better than I was, but I’m still very unwell and in pain every day. I feel lost.”
Around 9,000 people in the UK have Addison’s disease, with more than 300 new cases diagnosed each year.
Early stage symptoms are similar to those of the flu and include fatigue, muscle weakness and lack of appetite.
An adrenal crisis occurs when cortisol levels drop so drastically that it can be fatal if left untreated.
DISMISSED BEFORE HOSPITALIZATION
Sarah first experienced symptoms in January 2013, when her son Samuel, now 12, was 18 months old.
Sarah said: “The GP said I should go from being a busy mum to being a child.”
In January 2013, Sarah was walking with a friend and her son in their stroller when she randomly lost the use of her fingers.
“I couldn’t move my fingers to get my son out of the stroller, my friend had to help me,” she said.
“My friend took me straight to the GP. They tested my reflexes and didn’t move.
“The doctor told me I had all the signs of a stroke or brain tumor and called the hospital to say I was on my way for more tests.
“I was devastated, scared and horrified. My friend agreed to take care of my son while I immediately went to the hospital.”
At York Hospital, an MRI scan gave clear results, leaving doctors baffled as to why Sarah was becoming so ill.
She was hospitalized, but quickly worsened.
My lack of hormones robbed me of my fertility and the chance to have more babies
Sara
Sarah said: “I was scared. I wanted to tell my family that I didn’t want to go.
“I was only 23 years old and I loved being a mother.
“My son was the best gift God ever gave me and I was very scared of losing my life and no longer being a mother and raising him.
“I was looking forward to watching my son grow up and spending lots of vacations and fun times together.
“I was getting so weak that I felt like I wouldn’t be able to fight much longer to stay alive and my body would give up.”
That night, while Sarah was in hospital thinking it was the end, an endocrine consultant visited her.
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When he looked at her pupils and saw that they were dilating on their own, he assessed her other symptoms and said they pointed to a failure in the pituitary gland.
Sarah said: “I was completely frozen in my body but I heard him say, ‘If you can hear me, I think I know what’s wrong with you, I think you have pituitary dysfunction and Addison’s disease, I’m going to start the dosing. intravenously. treatment and blood tests to confirm this.”
“I was so relieved that someone was finally confident. I had hope.
“I heard him tell my family that if he was right, I should slowly return to them.”
10 YEARS OF HELL
After four weeks of uncertainty, Sarah’s diagnosis was confirmed and she was treated with intravenous steroids.
Treatment for Addisson’s disease usually involves steroid medication for life, says the NHS, but if the dose is too high there is a risk of other health problems.
When Sarah became unhappy with her unwanted symptoms and lack of any improvement, she paid privately for blood tests at London Harley Street hospital in 2023.
They found that Sarah does not produce any DHEA (dehydroepiandrosterone) hormone, which controls blood sugar, appetite, metabolic system and organ function.
DHEA treatment is not available on the NHS.
It also turned out that Sarah does not produce estrogen, progesterone and testosterone, so she started hormone replacement therapy (HRT), which women use during menopause.
Sarah said: “My lack of hormones robbed me of my fertility and the chance to have more babies.”
She also claims that private doctors told her that she should not take steroids daily for 10 years, adding: “Ten years of steroid use gave me osteoporosis in my bones and damaged my veins.
“They are all so thin and fragile that it is very difficult for doctors to draw my blood or inject medication, so they have to put it into my main artery through a picc line.
“My BMI being so high is very dangerous for other health reasons.”
How does the NHS treat Addison’s disease?
Addison’s disease, also called adrenal insufficiency, is an uncommon disease that occurs when the body does not produce enough vital hormones.
In up to 90% of cases, it is the result of a problem with the immune system, which causes it to attack the outer layer of the adrenal gland.
Early symptoms are flu-like, including lack of energy or motivation, muscle weakness, moodiness, loss of appetite, involuntary weight loss, and increased thirst.
Dizziness, fainting, cramps and exhaustion may appear afterwards.
With treatment, the symptoms of Addison’s disease can be largely controlled.
Most people with the disease lead normal lives and are able to live an active life with few limitations.
But many people with Addison’s disease also find that they need to learn to manage bouts of fatigue, and there may be associated health problems, such as diabetes or an underactive thyroid.
Treatment
Treatment usually involves corticosteroid (steroid) replacement therapy for life, says the NHS.
Corticosteroid medications are used to replace the hormones cortisol and aldosterone, which the body does not produce enough of.
Some people take dehydroepiandrosterone (DHEA) to improve stamina or libido (sex drive). DHEA is not available on the NHS.
In general, medications used for Addison’s disease do not have side effects, unless the dose is very high.
This can cause problems such as weakened bones (osteoporosis), mood changes and difficulty sleeping (insomnia).
Conditions associated with Addison’s disease, such as diabetes or an underactive thyroid, may also need medication.
Sarah also said that the steroids “destroyed” her immune system.
Sarah said: “I spend months every year in hospital on oxygen and intravenous antibiotics because I have no immune system.
“I had to find £14,000 for private treatment to receive intravenous infusions of iron, vitamin C, magnesium and zinc because I can’t absorb vitamins and minerals from food or supplements.”
More recently, Sarah developed severe gastric symptoms, making it difficult to eat or drink water without going to the bathroom seven or more times in just a few hours.
Sarah said: “I would love it if my body could digest food, lose weight and get back to my previous healthy BMI, but it all seems impossible at the moment.
“However, I am the strongest I have been in years. When I regain my strength I want to do more, I want to lose this weight and help other people.
“It’s important to me to raise awareness about this terrible disease and for women to trust their instincts when they feel something isn’t right.”
Sarah shares her physical and mental recovery journey Instagram page.
She said: “I turned my decade-long battle with Addison’s disease and pituitary disease into a beacon of hope.
“Alongside uplifting quotes and reflections, I share my personal journey. I want to create a community of healing, support, hope and resilience for others.”
You can donate to support Sarah’s private medical needs at GoFundMe.
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This story originally appeared on The-sun.com read the full story
