Story
Thanks for taking the time to visit my JustGiving page. Although a sickle-cell disease sufferer and unlike many people affected by this terrible condition, I am fortunate enough to be able to do this run to raise awareness and support fellow sufferers to carry on with their daily battle. Also in thanks to all blood donors as well as Guy's Haematology department's lovely medical team who not only are dedicated in giving the best care but also in helping us to keep smiling in difficult situations, makes a massive difference!
Sonia’s update of the 29th March 2016:
Apologies for the well overdue update! My last long run of 16k of the 5th March really took its toll on my leg, so I decided to give running a rest; carry on with other cardio activities, in view of resuming training after my treatment of last Thursday. Been feeling a little run down pre-treatment and was looking forward to the post-treatment boost I normally get once recovered. Unfortunately not only did the treatment didn’t go as planned and left me even weaker, but also needs to be done again next week, in a slightly different way.
Well, I should have started by explaining the reason why I get these treatments and what they involve. Sickle cell is something you’re born with, a blood disorder inherited from your parents. I always felt like there was something “wrong” with me as I was growing up, but my pains, illnesses and symptoms were always miss-diagnosed. The fact that I was a little tom boy with high pain thresholds who never cried and lived in a small town where sickle cell is almost unheard of didn't help. I must also point out that none were as bad as they can get. So when I was diagnosed at the age of 26, it was almost a relive to finally have answers and understanding of what had been happening all along. I was fortunate enough to have my worst crisis post diagnosis and receive correct treatment, as it could have easily become life threatening and the pain was surreal. To give you an idea (well for the ladies reading haha), 48hr & 24hr labours without epidural or gas & air were painful but nothing compared to a full blow crisis… Despite a few hiccups, I've been fortunate enough to lead a normal life, almost pain free, have two beautiful boys, work that I love (yes bosses are good sponsors hihi), a good social life and passion for fitness and sports. Many sufferers are not as lucky...
Sickle cell disease affects red blood cells, which can become abnormally shaped and block vessels, resulting in tissue and organ damage as well as episodes of severe pain. I suffered a stroke a year ago, at the age of 33, due to sickling and since had to undergo blood exchange transfusions. Thanks to a few factors like good fitness, diet and young age, I made a swift and full recovery. Treatments involve replacing sickle blood with non-sickle blood, which can reduce the risks of secondary stroke, or be used as treatment or prevention of painful sickle crisis. Normal red blood cells unfortunately only live 120 days in your body, thus the need of having the treatment repeated periodically (the frequency depends on the reason for exchange). This is in my case done every 6 weeks but as my blood composition pre-exchange does not meet targets, frequency might have to be reduced to every 4 weeks in the near future. Hoping another solution can be figured out, but I have prepared myself for any outcome. This explains the unwell feelings pre-exchange and I understand also puts me at higher risks, so whatever needs to be done, will be done.
Thanks to the process been done using a machine, 10 pints of blood can be removed from me whilst 8 pints of donated blood given simultaneously, only making the whole process including prep & final tests of half a day (well on a good day…). This will be for me a life-long treatment and I wanted to take this opportunity to thank all blood donors and encourage blood donations. I would give if I could, but can only be a taker...
So still not 100% right now as my blood wasn't great and clotting up the machine last week, only received 1 pint in the end, with 2 removed, over the course of 5 painful hours, came out swollen, bruised and sore, so it's not always plain sailing and doesn't come without risks either. My treatment is also now overdue. Probably won’t feel great till next one and not been able to really train right now. Very frustrating as there's only a month to go till D run. Treatment after next was discussed to fall a week before the run to give me time to recover and be on top form, but all that has now been thrown out the window.
Hamstring is still not good either and I was beginning to think how on earth am I gonna get through this! Got a nice little phone call from my mum in France this evening, telling me that she, my sis and step dad will come over to cheer on me. I go to France every year, and mum and little daddy visit when they can too, but my sis last came to London over 10 years ago, so image the news! That has really given me the boost I needed, despite the tears of joy. She even talked about their planned cake sale to raise fund from my old friends and village! Awww Mama! So I’ll finish this, even if I have to walk some of it. Been quiet fit although not a runner, my aim was to finish under 2.5 hrs, but it has now come down to been happy with just finishing. I have to be realistic as things didn't go as planned.
Sorry , tried not to write a book here and spend more time thinking of what to leave out rather than actual writing, but feeling quiet inspired after that little phone call...
Still found a few spelling mistakes after my 5th time proofreading! So please ignore any "typos" that you may come across, as it's really late and I need to get some sleep, big day at work tomorrow, but I thought I'll write whilst the inspiration's there. And English is only my second language, what a brilliant excuse.
Thank you all again for your support.
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