Picture description: A group of ten people holding up pieces of card that each contain a letter to spell out 'Beat Macular Disease', along with the Macular Society's logo. Picture credit: the Macular Society (linked).
This week is Macular Week! From the 22nd June to the 28th, the Macular Society is hosting 'Macular Week' to help raise awareness of the various eye diseases which affect the macular; the part of the eye which allows people to see centrally. During this week, the charity also hopes to highlight the importance of funding research and treatments that may help slow, stabilise and one day, cure(!), vision loss in macular disease patients.
Given the current pandemic, the Macular Society is encouraging individuals to fundraise from home with the 'Step Up to Beat Macular Disease' challenge, To get involved, all you have to do is decide on how many steps you want to achieve - and how you plan to achieve them (i.e, running, walking), register with the charity and create a page on Just Giving. As many of us with eye diseases are shielding, even we don't have an excuse not to get involved... we could literally climb the stairs. It's not exactly Mount Kilimanjaro, but baby steps! This year the stairs, next year...? Okay, I'm not going to say it because I'll that feels like a high pedastool that I'm just not sure I can commit to.
If you're feeling a little less active (I know that lockdown hasn't been a revolutionary fitness overhaul for everyone... trust me, I restart my 'fitness journey' every Monday, and then again the following week, and then... you get the point), but if fitness isn't for you but you have a little spare, you can always donate as an alternative. Or, if funds are tight - again, the pandemic has affected many people financially - simply raising awareness of macular disease (in all it's shapes and forms) will go a long way to helping us beat vision loss. If you've got social media and/or like to talk, use your platform and voice to shout out about it. To my gobby friends and family... I'm looking at you to help me out on this one...
And as I'm a big believer in 'practice what you preach', let's start the awareness here!
Macular disease is a huge umbrella term for so many different conditions which can cause sight loss. As you all know, I am personally affected by PIC, or Punctate Inner Choroidopathy for those of us who can just about pronounce it (stick with PIC, it's much easier).
PIC is an inflammatory disease believed to have an autoimmune cause. So in essence, my body just decided one day to start attacking my eyes - clearly my body is not a temple (and I'll be forever bitter about it). The inflammation, if not treated, causes scarring which results in blind spots. Where there is scarring there is also a risk of new blood vessel growth, which causes wavy/distorted vision and needs treating with injections. I really never knew I was brave enough to take an injection to the eye until I had to. For once I was grateful to have such a strong prescription; I've really no idea how big that needle was and still don't know now, my ignorance on this really has been bliss. Anyway, I digress...
Although new blood vessel growth can often be treated with injections, blind spots from scarring, although they could change over time, are currently not treatable (hurry up stem cell therapy).
At the moment, my current level of vision loss doesn't prevent me from living the life I had before this disease (I am lucky enough to still be able to read, drive, cook, do my makeup, all the things I love doing), I spend so much of each day just overwhelmed by the anxiety of what I have lost and what I can still lose, especially as my right eye is very minimally affected. And when you are told that the vision you have lost can't be restored, and that for now, this is your 'new normal', some days can be pretty tough. When the hours aren't passed worring about what could still be lost, or greiving what's already gone, a good amount of time is then spent googling miracle treatments, clinical trials and the progress of stem cell therapy. I think knowing how close the latter is to changing the lives of vision loss patients, really spurs me on to raise awareness of PIC, other eye diseases and the research and treatments currently in development. The progress that is being made is incredible, and I truly believe we are going to have some ground-breaking treatments in the next couple of years.
So if like me you want a future where vision loss becomes an archiac disease, please join me in raising awareness this #MacularWeek. If you're taking part in a fundraising challenge, let me know, and if you're using your voice to raise awareness, I hope to either hear about it in conversation, or, seen as the world is a big place, see your posts on social media.
And for those who want to learn a little more about macular disease, it's various forms, treatments and how to help, please click the links in this blog, or take a look at the links below. Happy reading!
Stay safe and I'll be back with an update soon... x
Types of macular disease: https://www.macularsociety.org/types-macular-conditions
Support for macular disease: https://www.macularsociety.org/support-services
Treatments for macular degeneration (and some other eye diseases): https://www.nhs.uk/conditions/age-related-macular-degeneration-amd/treatment/
Latest on stem cell therapy and research: https://www.macularsociety.org/news/why-there-still-no-cure-macular-disease
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