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:

My Muscular Dystrophy

I'm Scared it Might be Time

My Son is My Hero!

Pain

Trapped Inside a Broken Body

I'm Proud to be Sabled

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:

The FSH Society (US)

Muscular Dystrophy UK

NHS Choices

Donating pages

The FSH Society (US)

Muscular Dystrophy UK

Thank you so much for your support!

Carbon Monoxide Campaign and Giveaway

Recently you may have seen me tweet and Instagram about Test It Tuesday. Every Tuesday I test my fire and carbon monoxide alarms and I urge everyone to do the same.

Carbon Monoxide is thought to have killed around 50 people and left 200 people, in this country, seriously ill* in 2012. Carbon Monoxide, also known as the 'silent killer' cannot be seen, smelt or tasted. Only a fully functioning alarm can alert you to the presence of carbon monoxide in your home. Only this alarm can save your and your families life.

There are still 35 million homes in Briton that are without a carbon monoxide alarm. I was one of those 35 million last year, because shamefully it was something that was always on my 'to do' list.

In 2012 I started working with Carbon Monoxide- Be Alarmed! and their campaign which opened my eyes to these figures. It scared me. Thanks to them I got a carbon monoxide alarm which is now safely fixed up in my home. My old landlord told me I didn't need one, I've been told not to worry about it but how can I ignore these figures? How can you take the risk any longer?

Preventing Carbon Monoxide Poisoning

1. Fit a carbon monoxide alarm in your home that sounds when the gas is present. This only takes a few minutes but could save your life. Your alarm should be placed in a central location in your home, fixed to a wall at head height, placed on a table or shelf. More information can be found here.

2. Have fuel burning appliances serviced annually by a qualified and registered engineer. If you rent, remember this is your landlord/lady's responsibility.

3.Don't block ventilation and have chimneys swept at least once a year.

4.Know the main symptoms: headaches, dizziness, nausea, breathlessness, collapsing and loss of consciousness. Key signs are if symptoms clear up when you are away from home and come back when you return, or if other people in your home experience similar symptoms.

5. Watch out for soot or a yellow/brown staining on or around your appliance, a lazy yellow/orange coloured gas flame instead of a sharp blue one or pilot lights which blow out frequently.

As part of this campaign to raise awareness of the dangers of carbon monoxide, CO Be Alarmed have kindly offered me 5 Carbon Monoxide alarms to give away. The first 5 people to leave a comment on my blog will be sent a free alarm.

Please take a moment to visit the website here for more information. You can also follow CO Be Alarmed on twitter via this link here.

Thanks for reading.

CupcakeMumma

* Research from NHSChoices