Mum’s brutal stem cell treatment has ‘all been worth it’ as she enjoys time with family – Grimsby Live
By daniellenierenberg
A Scunthorpe mum who underwent 'brutal' stem cell treatment says the hardest part was not being able to see her daughters.
Joanne While has recently passed the six month anniversary of the treatment to wipe out and then regrow her immune system.
The mum-of-three was diagnosed with Multiple Sclerosis (MS) at the age of 31, and wasn't eligible for trial treatments in the UK.
The HSCTtreatment in Mexico saw her undergo chemotherapy and then have stem cells transplanted in the hopes of stopping the damage that the MS was causing. Some MS patients have also seen their symptoms be reversed from this.
"It was a very harsh, brutal treatment. I had to be kept in a special apartment where I protected from all germs. There was a lot of sickness and just getting out of bed some days was difficult," Joanne said.
"The hardest part was being away from my family. My ex-partner was very kind in taking a months unpaid leave to come to Mexico and help me through the treatment.
"At the end of the day, all of the treatment has been worth it.
"I had a brain MRI scan two months ago which showed that the MS lesions hadnt grown since last time. My body is still recovering, so time will tell exactly how good the news is."
The HSCT (haematopoietic stem cell transplantation) treatment cost the family 45,000 including flights and visas. They launched an online fundraising page last year to help cover the costs.
With her weak immune system still being rebuilt, Joanne has been shielding since before the coronavirus outbreak began.
Her family have adopted extremely strict hygiene measures at the Scunthorpe home to keep her healthy during this critical time.
HSCT is a chemotherapy-based medical procedure that wipes out the immune system and reboots it using a patient's own stem cells, which are harvested from their blood or bone marrow,
The aim is to reset the immune system to stop it attacking the rest of the body, therefore halting the progression of the MS.
It is the only medical procedure currently available that has halted the progression of the majority of patients undertaking it.
HSCT is currently available only on a trial basis in the UK, and only for individuals who have been unsuccessful with the range ofdisease modifying therapies. Each time it fails, irreparable damage is being done and the disease continues to progress.
"Before the outbreak, it had just gotten to the point where I was able to venture out for a coffee, but of course all of that has stopped now," Joanne said.
"I had to pull my daughters out of school early to minimise the risk of them bringing the virus home. Now we regularly sanitise the house and change clothes whenever we have to enter or leave in order to keep it as clean as possible.
"My eldest daughter, who is 24, has been wonderful as my carer. She has stopped work to prevent her from catching any infections.
"Im often tired and need a three hour nap in the afternoon, which can be difficult with a five-year-old in the house. Its been a balancing act, but Im so grateful to everyone who helped me during or since the treatment.
"Shielding can be frustrating, but its all about your mindset when you look at it. Its not that I cant go outside I get to be at home in my favourite place with my daughters."
Due to her compromised immune system, Joanne has had to start her vaccinations again and has just been given those that are usually given to babies.
Tests have also shown that her white blood count has recently decreased to the point it was in Mexico, although Joanne has hopeful it will recover.
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HSCT can initially cause mobility issues and stiffness in muscles, which Joanne is having physio to manage.
She is documenting her recovery on her Facebook page 'Jo's HSCT Journey'.
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