"Please keep me out of a wheelchair.I have 13 brain lesions I do not want anymore "
Russia on April the 3rd for Chemo/HSCT in Moscow is the only treatment that can halt this disease and prevent more brain damage.
Multiple Sclerosis or MS is a progressive incurable disease (demyelinating disease) that can affect your brain, spinal cord, and the optic nerves in your eyes. The insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems. MS symptoms are different for each person and everyone experiences MS differently. The most common symptoms experienced are:
Motor control - muscular spasms, weakness, coordination, balance and functioning of the arms and legs
Fatigue - including heat sensitivity-pain
Other neurological symptoms - including vertigo, pins and needles, neuralgia and visual and hearing disturbances
Continence problems - including bladder incontinence and constipation
Neuropsychological symptoms - including memory loss, depression and cognitive difficulties
MS takes several forms, with new symptoms either occurring in isolated attacks (relapsing forms) or building up over time (progressive forms). Between attacks, symptoms may disappear completely; however, permanent neurological and other problems often remain, especially as the disease advances. In early years Sarah had relapse remitting and more recently the disease has progressed to secondary progressive form.
For over 15 years Sarah has experienced a variety of symptoms treated in isolation by a variety of consultants at a mild to moderate degree. It was not until 2017 these cluster of conditions were recognised to be MS when a Neurologist became involved.
A late diagnosis of MS and lack of treatment for the disease specifically has allowed the disease to progress rapidly. The past four years a variety of symptoms increased as did their intensity. In September 2017 the condition deteriorated at an aggressive rate with the addition of new symptoms and the intensity of old issues amplified. In December 2017 Sarah was struck with an acute flair causing her to loose the power of her legs. With medical treatment she now has regained leg function with constant leg pain remaining. She has a broad variety of daily symptoms that have now moved from relapsing to permanent symptoms. This affects daily functioning considerably.
The list is over one A4 sheet in length at this stage. Many of these symptoms others can never see however they radically impair a person’s ability to function. Sarah can only function for three to four hours a day on very good days. During a recent acute flair of MS she only had one hour functioning a day. The rest of her day was spent in bed on the couch.
Sarah’s recent MRI s of the brain and back have revealed over thirteen lesions .Treatments offered in Ireland for MS are drugs to delay relapse and some may help with certain symptoms. No treatment attacks the disease like for example treating Leukaemia with HSCT and stem cell. This is only offered to cancer patients even though it can be used for many diseases.
In a desperate search to find anything to halt this unrelenting beast known as MS we came across Dr.Fedorenko HSCT treatment in Russia.
What is HSCT? Hematopoietic Stem Cell Transplantation (HSCT) is a treatment that is gaining momentum worldwide. HSCT is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood. HSCT involves the intravenous (IV) infusion of autologous or allogeneic stem cells to re-establish hematopoietic function in patients whose bone marrow or immune system is damaged or defective. It is not actually new to the medical world, while seeming revolutionary to those who have never heard of it before. HSCT has been carried out by hematologists around the world for over 50 years as a treatment for cancer. This procedure has also been performed for over 20 years to treat a wide range of hematologically-based autoimmune disorders. Demonstrating a growing popularity in this treatment based on clinical results over time, over 1600 patients, worldwide, have been treated with HSCT for MS. This treatment is scientifically proven to restore immune self- tolerance, and also to provide the patient with an enduring curative outcome after only one single procedure. HSCT can offer all MS patients, especially in the early stages of the disease, a chance for a life free from MS progression.
The treatment performed by Dr Denis Fedorenko and Team at The A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre Moscow takes around 35 days and includes inpatient care for the entirety of the treatment. Sarah has been accepted to hospital in Russia under the care of a specialist Haematologist where she will receive this treatment..
Your help would be hugely appreciated .Any donation, of any amount, will go towards the hospital treatment fees and stay in Russia and recovery. There is no funding available at all towards this treatment from the HSE or private health insurance. She is suffering severe side effects from the different treatments she has received to date. She will now be stopping some of her current treatments in order to have a drug washout period to allow her to commence intensive treatment in Moscow.
Any contribution no matter how small can help us send Sarah to Russia for a chance to regain some quality of life again. If you are unable to donate please share this link on social media where it will surely hit home with someone considering 2.5 million people around the world have MS.
It has now reached a point where we can no longer do this ourselves. Recovery after a successful stem cell transplant is likely to take up to 2 years. Sarah will have a long road after coming home but we hope that will be the end of treatments for her. It is not an easy decision to come to, leaving Ireland for treatment abroad but one that has not been made lightly.
How can I Help?
If you are not in a position to donate no worries please share this page as a link in your social network accounts. You can donate by card on this page. Transfer online with the bank details below or go to the bank and lodge it
You can also share this link with your email and phone contacts and also ask them to donate or organise an event
A charity run/cycle or a hair dye/shave event, bake sale at work etc and donate the funds to the below bank account. Thank you so much Sarah