Prader-Willi Awareness month is in full swing, but why is this important?
Prader-Willi affects 1 in 22,000 births, meaning it is pretty rare! Before my daughter received her diagnosis, I had never heard of the syndrome never mind knew what it was. I think many other families will say similar.
Now it is completely understandable that families and friends of those with PWS will want to know more, but why is it so important to raise awareness in the wider community?
It’s Not Just about Food!
PWS has over 40 symptoms associated with it, which vary in severity. They can affect every part of the body.
There are many things that people with PWS need in order to help keep them safe. Food management, safety management, physical aids, support with mental health, routines and plans, time to process instructions etc.
How nice would it be to go somewhere and say, “my child has Prader-Willi Syndrome” and the establishment know what this means, without having to follow it up with a lengthy explanation! The more people who have heard about and understand the syndrome, the better equipped they are to help, support and keep your loved one safe.
How Can Social Media Help Research
Again, going back to the 40+ symptoms. We are not going to find a miracle drug that eradicates all of these symptoms. Research is going to be ongoing and in order to fund research, we need support.
As this is a rare condition, we cannot rely on just PWS families alone to fund the research. We need more support and funding from the wider community, corporations, clubs, groups, grants etc. If people haven’t heard of it, how can they support it?
It has been a delight to see how many PWS families are sharing information about PWS on social media during awareness month. Education is key.
I have seen many comments on awareness posts, of people who are shocked at what our PWS loved ones go through daily. How much effort they must put in to even the smallest of tasks.
There is only ONE way to make the lives easier for those with PWS and that is RESEARCH. If you are reading this, and you have been keeping up with Awareness month, I urge you to reflect on what you have read and think about how you may be able to help offer some hope to these families.
There are many ways you can support FPWR UK, without even leaving your armchair – from shopping smart online, where a percentage of you purchase gets donated back to us (easyfundraising/amazon smile), to a one-time donation by text, bank transfer or JustGiving. Maybe even a small monthly donation by text or standing order.
Please contact us for more information by using our Contact Us page here on the website.
Keep sharing the awareness posts, talk to friends and family, educate others, raise awareness, and donate.
Happy PWS Awareness Month
P.S. Don’t forget to wear Orange on 28/5/21 in support of PWS!
Anyone Can Support FPWR UK and Our Research
Here’s Daisy and Mason supporters of FPWR UK’s Go Orange Awareness. We can make a difference, research is how will find a cure for PWS