Help change Deepa's Life with HSCT

Hi everyone,

My name is Deepa. Thank you for looking at my ‘gofundme’ page.

I've started this campaign in the hope to raise funds for Stem Cell Treatment to stop my MS from becoming any worse than it is. The treatment needs to be done at the earliest and there are available dates in  October which I have provisionally booked.

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At the age of 20, I was diagnosed with Multiple Sclerosis and am having to deal with the symptoms that come with it. I have an amazing husband and 4 year old little princess.

When I was first diagnosed, I hadn’t heard of MS and I didn’t know what it was. I remember going to see the consultant at the hospital and him explaining that I have MS. I remember leaving thinking this was something serious and I need to find out what it was. I don’t think I took anything in with what he was saying to me. I did some research and was left a bit confused.

Before I had MS and even within the first 5 years of being diagnosed, I was active, going swimming 2-3 times a week, socialising with friends, working two jobs and just generally enjoying life. To tell you the truth I’d put the thought of MS to the back of my mind and I just carried on with day-to-day things and told myself that my daily aches and pains were not related to MS. 

At this point I only had minor symptoms and they cleared up within a couple of weeks. Although reading about this illness and not having any symptoms I was kind of in denial I had MS at all. I felt like it was just a passing phase of something was wrong but had cleared up.

My symptoms started when I had some vision related issues (blurred vision) and then some numbness which is what led to my initial diagnosis. I didn’t really have any more symptoms for three or four years and it was about then that I started having some balance problems and prickly sensations in my legs. Again I was lucky enough to have this clear up with steroids.

It wasn’t until 2007/2008 when I started to really notice that something wasn’t quite right in my walking. My toes started going numb, I was tripping over little things and my legs would get fatigued a lot faster. 

I started a disease modifying drug Avonex in the hope that it would suppress my MS. 2 years had gone by and this drug wasn’t helping, I was still having the problems with the legs and walking and not to mention the good and bad days that come with having to inject yourself with medication. My consultant recommended I try another drug called Tysabri which is another disease modifying drugs. This medication was great at first and it was working. With a little bit of exercise and healthy eating I managed to overcome the symptoms And found myself actually getting stronger. I got married, we opened up a cake shop and my stamina running around again had come back. It felt so good to be having this medication and feeling the difference.

In 2013, I became pregnant and had to stop taking this medication and nine months later I gave birth to my gorgeous baby girl Anaya.

It was at this point a few months after pregnancy, that I started having real problems with walking and balance. I was starting to get dropfoot and I found myself finding it difficult to move my legs as they started to feel like I was lifting lead. I contacted my consultant and arranged to go back on my medication. It look about a year to get accepted and on the waiting list for the meds.

I finally started my medication a year later and have been taking it for just over 2 years. Only this time round they are not doing their job and it’s taking a huge toll on my life.............From here on, it pretty much goes downhill.

After 6 months of the medication, I started off walking with one crutch for balance, and then was persuaded to use 2 crutches as it was becoming a bit of a safety issue for me and now on many occasions I have to use a walker or a wheelchair for longer distances.  I do not drive at the moment because the legs do not allow me to do so.

I can’t believe within three years that my walking has deteriorated so much. Not only has my walking been affected but my right arm has a little spasticity and weakness too which really limits me to what i can do.

There are so many things that I can’t do but still really try. My muscles get really fatigued and the signals to the nerves do not get through to certain parts of my body because of damage to the nerve cells, which leaves me exhausted and tired. After doing a little house chore for ten minutes or so, I have to rest for about 30 minutes because my legs don't stop working and aching. Waling then becomes a real effort, even to more 3 or 4 steps.

It really upsets me when I see other parents take their children to the classroom and I can’t do that. I struggle with pretty much day to day life. Getting up in the morning, the stiffness you get from really tight muscles so you have to stretch them all first to even get out of the bed. Walking out of my house is hard with the walking sticks. What should be a minutes walk can take up to 6-7 minutes. Climbing up stairs leaves me unable to lift my legs and then I’m stuck wherever I am on the stairs. I usually wait a few minutes to regain my composure and try again which usually helps. Little things like taking out the ironing board, putting in a plug to charge my phone, picking up things from the floor, do up a button and doing a plait on my daughter’s hair.

I’ve tried everything to keep myself fit and healthy. I regularly perform stretches and strengthening exercises, I eat well and I even went on a ‘candida diet’ in the hope that some of the symptoms related to MS were because of my intolerances to certain foods. I actually cut out sugar and the derivitaves of sugars out of my diet completely for five months, but the diet left me feeling so weak and tired. I came off it not having it make any difference to my symptoms.

I had heard about stem cell research a few years ago, but at the time it was on its early stages but at least there was ‘hope’. The few years after, research was being released showing promising signs for a number of patients undergoing this treatment. However, the waiting lists or even finding the right clinic was nearly impossible. 
Recently there have been many breakthroughs in stem cell treatments and in the back of my mind I always thought that I would one day have the treatment and regain a part of my life at least. But, due to me being unable to work and my husband being self employed, the enormity of the cost has always pushed that thought further to the back of my mind and I just carried on carrying on with my condition.

I had an appointment with my consultant about having stem cell treaatment, where I was told that as I did not fit the criteria the regulations state, I was unable to have the stem cell treatment. He offered me yet another disease modifying drug to slow the progression.

I joined lots of stem cells treatment groups on Facebook and got to talk to people who have had this treatment done abroad. After speaking to them I could see the benefits they were experiencing from the treatment. Some were previously walking with 2 crutches and are now walking without them on short distances, fatigue levels and incontinency have gotten better and they have generally seen an improvement in their quality of life. Many post HSCT patience also told of their experience in having a new lease of life, with so much more energy. 

The most important part is, that even 3 years after the treatment, there are no signs of MS. No brain activity, no new lesions or scarring. This stem cell treatment halts the progression of MS. This treatment, I feel, is the only way going forward for me. I need to stop my MS from getting any worse than it already is, otherwise I feel I will become completely house bound and totally dependent on my husband and family to live my daily life.

With your help I could one day be able to walk alongside my husband and daughter and feel my independence again. I can’t tell you how much it would mean to me and my family. I just want to do some of the things a married woman and mother would do for their family. My daughter doesn’t know what it feels like to walk with her mum, or to play in the park with me. I really would love that more than anything.

I thank you again for taking the time to read my story and watch my video.

It would be amazing if you could donate, but if not a simple share would work wonders.

#stemcellsfordeepa

You can also watch a video I have made on my campaign
https://youtu.be/dC4xBEDWwGs