A MUM has spoken of the heartbreaking moment she could hear her family say goodbye as she lay paralysed and unable to respond.
Sarah Saunders, 34, baffled doctors as to why her body was failing, having started with headaches and strange sensations of warm water running down her legs and spine.
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She claims she visited the doctor three times within a month but was dismissed as being “run down” as a new mum.
But when she lost feeling in her fingers, Sarah rushed to hospital, where within hours she couldn’t squeeze the medics’ hands.
She then rapidly lost the ability to walk, talk, move her arms and even blink.
Sarah, who lives in Peterborough and is married to Stephen, said: “My blood test results suggested that my liver, heart and kidneys were under strain and they weren’t coping but the doctors still couldn’t find a reason why.
“Doctors were talking to me saying my organs weren’t coping and there was nothing they could do without knowing the cause.
“My family were with me and I could hear how devastated they were to hear this news but I couldn’t comfort them, it was awful.”
While Sarah lay fully conscious but unable to communicate, the doctors gathered her family to her bedside to say things weren’t looking good and if it continued, she would not have long to live.
Sarah said: “My little boy was only 18 months old and I was desperate to tell him I loved him and give him a cuddle.”
Thankfully, an expert consultant gave a diagnosis that saved her life within hours.
Sarah was found to have Addison’s disease, which is when the adrenal glands stops working and producing sufficient cortisol and aldosterone hormones – which are essential for survival.
This causes symptoms of extreme exhaustion, loss of appetite, low blood pressure, dizziness, sickness, abdominal pain, low mood, headaches, a high temperature and much more.
Sarah’s adrenal glands failed which led her to suffer paralysis.
Once she was diagnosed and receiving treatment, Sarah regained use of her body.
Although she is no longer critically ill after the ordeal 10 years ago, Sarah said her life is “unrecognisable” now.
For years, she was on steroid medication which can cause side effects like weight gain, muscle and bone weakness, diabetes, increased risk of infection, thinning skin and mental health problems.
Sarah said: “Before Addison’s I was really fit, I did daily exercise, I loved full body workouts and 11 mile walks, I lived a very active lifestyle.
“Now I’m weak and have a carer who helps me with daily activities.
“I have gained 15 stone due to daily medications.
I was so looking forward to watching my son grow up, and doing lots of holidays and fun moments together.
Sarah
“I feel like I’ve had 10 years of my life taken away from me.
“I just keep feeling frustrated as I’m better than what I was but still so poorly and in pain daily. I feel lost.”
About 9,000 people in the UK have Addison’s disease, with over 300 new cases diagnosed each year.
Early stage symptoms are similar to the flu and include fatigue, muscle weakness and lack of appetite.
An adrenal crisis is when cortisol levels drop so drastically that it can be fatal if left untreated.
DISMISSED BEFORE HOSPITALISATION
Sarah first had symptoms in January 2013 when her son Samuel, now 12 years old, was aged 18 months.
Sarah said: “The GP said I must be run down from being a busy mum to a toddler.”
In January 2013, Sarah was out for a walk with a friend and her son in his buggy when she randomly lost the use of her fingers.
“I could not make my fingers move to get my son out of his pushchair, my friend had to help me,” she said.
“My friend rushed me straight to the GP. They tested my reflexes and they didn’t move.
“The doctor told me that I had all the signs of a stroke or a brain tumour and called the hospital to say I was on the way for further tests.
“I was devastated, frightened and horrified. My friend agreed to look after my little boy as I went to the hospital immediately.”
At York Hospital, an MRI came back clear, leaving doctors baffled as to why Sarah was becoming so ill.
She was admitted but deteriorated rapidly.
My lack of hormones stole my fertility and chance to have more babies
Sarah
Sarah said: “I was scared. I wanted to tell my family I didn’t want to go.
“I was only 23 and absolutely adored being a mother.
“My son was the best gift God has ever given me and I was so scared of losing my life and no longer being a mother and raising him.
“I was so looking forward to watching my son grow up, and doing lots of holidays and fun moments together.
“I was becoming so weak that I felt I couldn’t fight much longer to stay alive and my body would give up.”
That night, as Sarah lay in hospital thinking this was the end, an endocrine consultant visited her.
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When he looked at her pupils and saw they were dilating on their own, he assessed her other symptoms and said they were pointing to a pituitary gland failure.
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 Addisons disease, I’m going to start IV treatment and blood work to confirm this’.
“I felt so relieved that someone was finally confident. I had hope.
“I heard him tell my family that if he was right I should slowly come back to them.”
10 YEARS OF HELL
After four weeks of uncertainty, Sarah’s diagnosis was confirmed and she was treated with IV steroids.
Treatment for Addisson’s usually involves steroid medication for life, the NHS says, but if the dose is too high, there are risks of other health problems.
When Sarah became dissatisfied with the unwanted symptoms and a lack of any improvement, she paid privately for blood tests at London Harley Street hospital in 2023.
They found that Sarah doesn’t produce any DHEA (dehydroepiandrosterone) hormones, which control blood sugar, appetite, the metabolic system and organ function.
DHEA treatment is not available on the NHS.
It was also found that Sarah doesn’t produce oestrogen, progesterone and testosterone, so she began hormone replacement therapy (HRT) that women use in menopause.
Sarah said: “My lack of hormones stole my fertility and chance to have more babies.”
She also claims private doctors told her she shouldn’t have been on daily steroids for 10 years, adding: “Ten years on steroids has given me osteoporosis in my bones and damaged my veins.
“They are all so thin and fragile it is very hard for doctors to draw my blood or inject medicines 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 illness that occurs where the body does not make enough of vital hormones.
In up to 90 per cent 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.
The early symptoms are similar to flu, including lack of energy or motivation, muscle weakness, low mood, loss of appetite, unintentional weight loss and increased thirst.
Dizziness, fainting, cramps and exhaustion can come on after.
With treatment, symptoms of Addison’s disease can largely be controlled.
Most people with the condition have a normal lifespan and are able to live an active life with few limitations.
But many people with Addison’s disease also find they must learn to manage bouts of fatigue, and there may be associated health conditions, such as diabetes or an underactive thyroid.
Treatment
Treatment usually involves corticosteroid (steroid) replacement therapy for life, the NHS says.
Corticosteroid medicine is used to replace the hormones cortisol and aldosterone, which the body is not produing enough of.
Some people take dehydroepiandrosterone (DHEA) to improve their stamina or libido (sex drive). DHEA is not available on the NHS.
In general, the medicines used for Addison’s disease do not have side effects, unless the dose is too high.
This can risk problems such as weakened bones (osteoporosis), mood swings and difficulty sleeping (insomnia).
The conditions associated with Addison’s disease, such as diabetes or underactive thyroid, may need medication too.
Sarah also said the steroids “destroyed” her immune system.
Sarah said: “I have spent months each year in hospital on oxygen and IV antibiotics due to having no immune system.
“I had to find £14,000 for private treatment to have IV infusions of iron, vitamin C, magnesium and zinc because I cannot absorb vitamins and minerals from food or supplements.”
Most recently, Sarah has severe gastric symptoms, which is making it difficult to eat or drink water without going to the toilet seven or more times in just a few hours.
Sarah said: “I’d love it if my body could just digest food, lose weight and get down to my previous healthy BMI, but it all feels impossible at the moment.
“However, I am the strongest I’ve been in ages. When I get my strength back I want to be doing more, I want to lose this weight and help others.
“It’s important to me to raise awareness of this terrible illness and for women to trust their instincts when they feel something isn’t right.”
Sarah shares her mental and physical recovery journey on her Instagram page.
She said: “I’ve transformed my decade-long battle with Addison’s 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 on GoFundMe.
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