This beautiful orange flower is from one of the school flower beds. I think after helping Mr K raise awareness of FSH Muscular Dystrophy this week, it's the perfect photo to end the week on (orange is the colour of MD charities)
Cupcake Mumma
Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts
Raising Awareness for World FSHD Day with Orange Sliced Smiles
Tomorrow is World FSHD Day. FSHD (Facioscapulohumeral muscular dystrophy) is a chronic and progressive illness I had never heard of until Martyn from Inside Martyns Thoughts started blogging about it over the years. Now FSHD is a part of my life because quite wonderfully, Martyn is now a part of mine.
When I first met Martyn I didn't notice anything different about him. He was sat in his car and then I realised his car had been specially adapted so he didn't have to use his feet to accelerate or break. When we arrived at our hotel Martyn got out of his car, he walked around and I saw how he had to stand, move, sit and I got an insight into how disability un-friendly the outside world can be - slopes, lose stones, pebbles - nightmare!
I wasn't shocked by Martyns' disability; it doesn't bother me. Do I need to adjust to some things? Of course! We both know that's to be expected but it's not a problem. One thing I do know is that FSHD is a cruel and progressive illness and it's hard to watch someone you care about very much be in constant pain, stared at and limited. I haven't seen the full extent of FSHD but I know I will. Please have a read of Martyn's posts about his Muscular Dystrophy:
Here are some facts about FSHD:
- Between 2,000-2,500 people in the UK have FSHD. Several generations of a family are often affected by the condition. It can be diagnosed at any age and can vary widely between individuals, even within the same family. One-third of those with the condition are unaware of the symptoms right into old age.
- The earlier the muscle weakness appears, the more severe it is likely to become. Between 10-20 percent of people with the condition eventually require a wheelchair. It affects the muscles of the eyes and mouth, including the ability to smile.
- FSHD is caused by a genetic mutation which causes a toxic protein to be produced in the muscle, killing the muscle cells. There is currently no treatment available targeting the underlying genetic causes of FSH. Muscular Dystrophy UK is funding research investigating the mechanisms leading to FSHD.
To help raise awareness I'm joining in with The FSH Society's #WorldFSHDDAY and sharing some orange slice smiles! Orange is the Muscular Dystrophy colour and Martyn and I would LOVE to see your sliced orange smiles on all social media platforms. Please don't forget to use the tag #WorldFSHDDay so we can find and share your fantastic photos too and thank you for your support. Don't forget to get friends and family involved too!
If you wish to read more on FSHD, get help for a loved one or donate, then please check out the links below:
Donating pages
Thank you so much for your support!
Spoonie Survival Kit Giveaway (Gifts for those who have a Chronic Illness)
I had a guest post a few months ago now (yes, sorry about the delay!) from the lovely Pippa all about her Spoonie Survival Kits. Pippa and her volunteers make little bags, cards and other little items to help those, like herself, who suffer from a chronic illness.
If you'd like to read the full guest post please do click here. Pippa has had a lot of support over the last few months and I couldn't be more pleased for her. To help with raising awareness I wanted Pippa to write about Spoonie Survival Kits and I also wanted to purchase several items myself from her shop that I could pass on via a blog giveaway.
First I have a survival kit. I am told these kits vary and include items of comfort to the recipient. Some days are harder than others and a little kit like this has made a difference to many people who have bought from Pippa. I have not opened the bag, as Pippa's aim is to have a surprise delivered to the recipient, therefore I will not spoil it! You can win 1, small yellow bag in the rafflecopter form below.
a Rafflecopter giveaway
a Rafflecopter giveaway
The second item is a lovely bracelet made by a volunteer, isn't it pretty? Again, please find the rafflecopter form below to enter.
Cupcake Mumma
Spoonie Survival Kits ~ A Guest Post by Pippa
Today I bring you a guest post from Pippa who I found via Instagram. I quickly found her GoFundMe page which helps her produce what are known as Spoonie Survival Kits. I donated and thought, why not get a post out to raise awareness of this fantastic idea that helps brighten the day of chronic illness suffers? I'll hand over to Pippa now, please do share this post!
Hey everyone! The lovely CupcakeMumma invited me to write a post for her blog, so let me tell you a bit about myself. My name is Pippa and I’m 20 years old. I am about to go into my final year of studying Psychology and Education at university, which I really enjoy. I live with a handful of chronic conditions including ME and Anaphylaxis, and would like to work in the field of chronic health in the future.
Each bag is a surprise for the recipient and tailor made for them.
Bags are £2.99-£6.00
In April, I began a little fundraising project called Spoonie Survival Kits. I decided to make some little bags of happiness tailored specifically towards those who live with chronic illnesses. I wanted the kits to contain items that would provide comfort to the recipient and remind them that they’re not alone. Being chronically ill is not easy, and I wanted to give a gift that people could treasure and turn back to on the bad days.
I use kind donations and my own money to create the kits, and then sell them online. 25% of the funds raised go into creating more kits and different products, and 75% goes to Action For ME; a charity that promotes awareness for Myalgic Encephalomyelitis.
The first few batches of kits have sold out almost immediately and the spoonie community has really got behind what I’m doing, and because of this I’ve been able to expand my project. As well as the kits, we now sell a range of items including bracelets and quote cards. I have two lovely volunteers and also have volunteering opportunities for other spoonies, many of whom have been crafting items to go in future kits. We are a non-profit organisation made for spoonies by spoonies, and we’re on a mission to spread some love to those who need it!
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| Some of Pippas wonderful kits made up ready for posting! |
If anybody would like to find out more or get involved, please email spooniesurvivalkits(at)gmail.com or have a chat to me on social media; I’m on Twitter and Instagram!
Love and spoons,
Pippa
Thank you so much to Pippa for sharing her story and her fantastic work. If you know a sufferer of chronic illness do you think a Spoonie Survival Kit would help them on a bad day? If you are a chronic illness sufferer, I'd love to know if you've had a kit and if it helped you. Look out for a future post where I'll be giving away several items from Pippa's store that I have purchased!
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