Awareness – help spread it!!!!

(Genetic &) Rare Diseases Day- February 28th.

I have always said ‘alone we are rare but together we are a forced to be reckoned with’. So with this in mind, this year I am working with the Mesothelioma Cancer Care Alliance to help spread even more awareness!

This years theme is Rare Disease’s Day !

With research, possibilities are limitless!

Truthfully Rare Disease day  meant absolutely nothing to me, hell, if I’m totally honest, I never even knew there was a day dedicated to rare diseases.
Like all of us, I believed I would never ever have to worry about a rare disease, or a genetic one.Ever.

I discovered this  Rare Disease Day (RDD) when my child was diagnosed with a rare disease.

I was actually trying, at the time, to find out more about his condition when someone had posted a youtube video entitled “Jeans for genes- we are rare, show you care”

I hit the play button.

I’m not going to bombard you with figures now, don’t worry!

I sat with a genetic counsellor, after Ethan was diagnosed with Mucopolysaccharide disease type 2~ MPS2 (Hunter Syndrome)for short! I took one thing from that meeting and one thing only:

“If every potential parent were to get genetically tested before having a baby, they would simply not risk it”~ that is a fact.

That blew my mind, immediately I felt amazed and blessed that my other son did not have MPS. (My last baby doesn’t either)

This day, February 28th is to let all of you out there know, that having a rare or genetic syndrome, is in fact, not that rare.

It could affect you; it’s all about the genes!

 

So please, wear jeans it’s not a big deal, but to me and thousands, all over the world it is a huge sign of support for those living with conditions like MPS.

 

 

Take a picture! Instagram it! Tweet it!  Facebook it!

Tell someone about Rare Diseases Day~ tell them about Ethan!

To show my support I will be wearing Purple, as it is the international colour of support for MPS, and I will obviously be dressed proudly in my jeans!

Thank you for reading and sharing this!

Did you know ?

February 28th is the tenth annual Rare Disease Day, created to bring resources and awareness about all rare diseases to impact policy, stimulate research and share how they impact patients’ daily lives. Worldwide, 300 million people are affected by the 6,000 classified rare diseases, however, only 5% of those rare diseases have a cure.
For more information checkout these websites
www.rarediseaseday.org

www.mpssociety.ie

Mesothelioma Cancer Alliance 

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