‘My sister saved my life’ – How mouth ulcer nearly killed Annie, 21
PUBLISHED: 05:30 05 July 2019 | UPDATED: 09:48 09 July 2019
A 21-year-old from Ipswich has told how she nearly died after what was thought to be a mouth ulcer turned out to be a rare blood disease.
Annie Lovegrove first visited a GP in January with a mouth ulcer that wouldn't go away. She was then prescribed with antibiotics only to return a week later after her mouth ulcer had got worse.
Doctors initially diagnosed her with tonsillitis, advising her to call 111 if her temperature didn't improve.
Annie was rushed to A&E the following day when her mother Hayley Sallows became increasingly worried about her daughter's health.
At hospital Annie was diagnosed with 'very severe' Aplastic Anaemia, which is a serious blood condition where the bone marrow and stem cells do not produce enough blood cells.
The disease only affects around 100 to 150 people each year in England - about one in 500,000 people.
Since receiving the news, Annie who worked as an admin assistant, has undergone more than 50 blood transfusions, chemotherapy and a bone marrow transplant from her 17-year-old sister Millie.
Annie said: "When I was told that a transplant would be my only option, I was very scared and overwhelmed as I knew it was serious.
Annie's bone marrow biopsy in February revealed that she had more or less non existent bone marrow, which is a substance found in the centre of bones where blood cells are formed.
Normally, the bone marrow controls the number of blood cells formed and released into the blood stream, so the body remains healthy. Too many or too few of any of the blood cells can cause problems.
Upon admission to hospital Annie's blood pressure was 75/45 and her blood levels were very low, with a haemoglobin count of 45, platelets at three and neutrophils 0.01.
Within the first 24 hours of being in hospital Annie had to have three pints of blood and platelets transfused, which basically kept her alive.
Her symptoms included extreme fatigue, bruising, high temperatures, loss of appetite, nausea, mouth ulcers, and petechiae, which are small red dots all over the body.
She added: "I was in isolation as I was neutropenic, which meant I was low on white blood cells, and I couldn't risk getting infections since everything was a risk to me."
Annie says she was in and out of sleep continuously because of how weak she was and didn't use her phone for more than two weeks.
'My sister saved my life'
Both of Annie's two sisters were then tested as willing donors, and luckily Annie's 17-year-old sister Millie was a perfect match.
"As a family we were ecstatic that Millie would more or less save my life," said Annie.
"But for my mum it was split emotions as she wanted me to get better but she also knew it would be a tough process for Millie to go through, as she was also due to take an A-Level exam around that time."
'Preserving my eggs was never not an option'
After finding a donor match, Annie had extensive chemotherapy in order to shut down her immune system so that her sister's bone marrow wasn't rejected.
She said: "Finding out that the chemo would make me infertile was awful to hear, so when I had a chance to preserve my eggs I knew it was the right decision despite the gruelling process.
"Preserving my eggs was never not an option as having a family in the future is such a big deal for me."
Annie successfully preserved 15 eggs during treatment, but says one of the hardest things was losing her hair.
"As you can imagine for a 21-year-old girl who prides herself on her appearance it has been incredibly hard to deal with losing my hair," said Annie.
"When it first started happening I convinced myself it was just thinning until I was waking up every morning with clumps of hair on my pillow. I knew then I had to take control, so my mum shaved it off and strangely I felt better knowing I wouldn't see my hair coming out.
"I am still shocked when I see myself in the mirror but I know it will grow back and it was all a part of the process of me getting better."
The bone marrow transplant in May was a success but Annie is still weak and needs regular medical tests and follow-ups to make sure she doesn't reject the transplant.
Six weeks after the transplant she managed to return home, but has since had to return for further treatment.
She said: "I can still reject the transplant within the next year so as much as I would like to go back to my 'normal' lifestyle I still have to take the next 10 months easy.
"My advice for anyone with similar symptoms would be to not be afraid to go to the doctors and feel you are wasting their time, because if my mum hadn't trusted her instinct then I wouldn't be here sharing my story."
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