Jenny's HSCT Journey

Over the past few years, the people who care about Jenny have watched as the loving caring and strongest woman we know has had her body turn against her. Jenny, used to run, spin, do HIIT classes and work out in the gym regularly. A few years ago, she started having issues running, with her left leg becoming weak for no reason. Then she couldn't run at all, and soon she couldn't walk for very long distances. As things got worse and her movement became more restricted she sought treatment from various doctors and physiotherapists who all seemed to be stumped by her condition which was misdiagnosed as a protruding disc causing left leg weakness.

 

In the summer her entire world was turned upside down when she was diagnosed with Multiple Sclerosis.

 

MS is a progressive degenerative disease of the Central Nervous System. There is no cure. The disease is lifelong and can cause multiple forms of disability. The condition of MS can range from constant pain, partial to complete paralysis, loss of speech, loss of motor skills, loss of vision, etc. There is no accurate way to predict the progression of this disorder. The one true underlying fact is that it gets worse overtime.

 

However, research has proved that a treatment called HSCT can halt progression. HSCT is a chemotherapy based medical procedure that ablates your immune system and reboots it using your own stem cells harvested from your blood or bone marrow. It is the only Medical procedure currently available that has halted the progression of the majority of patients undertaking it. It is not 100% guaranteed in halting everyone's disease, but the vast majority of patients have had success. As the aim of HSCT is to HALT the progression of the autoimmune disease, any healing of symptomatic damage already done is a bonus and not guaranteed, some patients get fabulous healing, others see small healing and some do not get any healing, which is why it is encouraged to have it sooner rather than later.

 

The NHS criteria to carry out HSCT in the UK is very strict and Jenny will not be offered the treatment here. The only options for treatment are in Mexico or Russia. However, it is very expensive. This out of country treatment would cost in the region of £50,000.

 

We are very keen for Jenny to get the treatment as soon as possible. With the progression of her symptoms now, she is at a level where they will accept her, but with acceleration of her condition, this won’t always be the case.

 

The decision to embark on an HSCT journey has not been easy to make but Jenny is determined to halt the progression of this awful disease.

 

We are really proud of our sister and how she remains positive and shows determination to tackle this disease head on.

 

We are supporting Jenny as much as we can both emotionally and financially throughout her journey and we would really appreciate any help with fundraising and any contributions towards the cost of the HSCT treatment that anyone can make. It really would mean so much to us all.

 

Thank you.

 

Ally and Elaine (Jenny's sisters)