Tuesday, 17 May 2016

5 things that Marfan Syndrome has taught me

If you follow my blog and twitter regularly then you'll know that I suffer with a genetic condition called Marfan Syndrome. I won't spend ages telling you all about it but if you want to know more then there is some great information on the NHS website. It's a pretty huge part of my life and over the past 5 years (and my whole life really!) it has taught me a lot about myself and others so today I thought I'd share a little about that with you all. This is a pretty spontaneous post so it's a bit of a chatty one!



1. It's okay to look different. 
Marfan causes my arms, legs, fingers etc to be quite long and slender and also caused my scoliosis (curvature of the spine) which became quite noticeable in the year before I had surgery so I've always looked a little different to others my age. I was bullied a lot during my school years and had people telling me I had an eating disorder for many years because I quite simply just looked a little different to others because of a genetic condition. As I grew up though it became easier to ignore such comments and I began to learn that the way I looked actually had no bearing on the things that really mattered to me. It taught me that everyone looks different in their own way and I shouldn't let ignorance or silly comments get to me when there was so much more to me than how I looked.

2. You really do have to appreciate everyday.
My condition is life threatening and the potential heart complications that come with it unfortunately meant that both my uncle and grandad passed away well before their time and things like that really do make you stop and think. I'm on a lot of online support groups and FB pages for those with Marfan Syndrome and when there is an announcement that we have lost someone else to this cruel condition it makes me appreciate life even more. I have an amazing team of doctors looking after my heart and regular checks but it doesn't stop you thinking about what could happen so I do my best to take everyday as it comes and to appreciate my life as it is, even when things aren't so great.

3. Some people are very ignorant.
Being young and having a condition that leaves you in chronic pain and needing a wheelchair is a concept that a lot of people still struggle to get their head round, especially the older generation unfortunately. Every time I sit in the priority seat on a bus I fear that I'll get the usual tuts and shaking of heads from fellow passengers. When I try and explain to people that my condition can't be cured and I won't get better I get advice about how diet and exercise can change my life. Scenarios like these are so common in my life these days and people just don't seem to want to listen to me and understand why I suffer with the problems I do. I try not to let it get to me though and tell myself that it is just a lack of awareness and understanding causing these things to happen but it isn't a nice feeling when a whole bus full of people are staring at you with looks of disgrace even though I really need that priority seat.

4. But there are also some very caring people out there.
Throughout the time that I've been blogging I've been lucky enough to come across some of the most kind, caring and generous people that I know. You've been probably seen that I've been trying to raise the money to get a powerchair recently and thanks to mainly the help and support of fellow bloggers I've been able to reach the halfway point within just a couple of weeks. People that don't even know me have come together to help me become independent and it really restores my faith in humanity.

5. I'm stronger than I thought I was.
These past 3 years have been a rollarcoaster and it's all gone by in flash, I'm not too sure how I've gotten through it all and it isn't until I think about it that I realise how much has happened. 3 major surgeries,  a lot of different scans, countless hospital appointments and enough metalwork in my body to set off the detectors at airports. I won't lie, it hasn't been easy. I don't know how I come across to everyone else but I try and stay positive and not talk about the very bad days but it's tough. I am tougher because of it though, if you'd told me 5 years ago everything that I would go through I think I would go into hiding thinking that I would never make it through all that. I did though and Marfan Syndrome will always be a huge part of my life and whilst the bad days won't become any easier I will mostly certainly become stronger.

Can you help me get my independence back? I'm trying to raise the money to get a powerchair so I can get my freedom back and live my life like most 18 year olds do, even donating just a few pounds would make a big difference. Find out more on my GoFundMe page.
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6 comments

  1. Shona, you are a trooper ♡

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  2. Hi Shona, I have just discovered your blog via Twitter and I am instantly drawn to how inspirational you are. You have a new follower in me! Amazing AMAZING news about reaching the target on the funding too! xxx

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  3. I also have marfans ive thought about starting a page about living with marfans you have inspired me alot thank you so much

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