Hi everyone,
I suffer from a rare disorder called Marfan's Syndrome.
Marfan's Syndrome is a genetic disorder that affects the connective tissue of the body in multiple ways but primarily the skeleton, heart, blood vessels and eyes. Unfortunately there is no cure and treatment is limited. Because it is a rare illness facts are limited, which makes helping those with the disorder extremely difficult.
This month is Marfan Awareness Month, which is why I have decided to talk about having Marfan's now. Mainly because there is very little awareness other than amongst those who have the illness and I am looking to do my bit to change that now.
Living with Marfan's is unbelievably difficult. Every day there is pain of some kind. For me it is skeletal pain. Walking, sitting and lying down can all be agonising. The pain level varies but it is always there. Day in day out. There's no break from it at all. There is a limitation to what I am physically able to do and that is incredibly frustrating.
Not knowing what is going to happen to the body next is a constant worry. I just get over one thing and then something else will happen. It is mentally and physically exhausting to have to keep dealing with these health problems, and the spectre of something else cropping up at any time.
In comparison to some my pain is not too extreme but it's bad enough. Places like Facebook give people with Marfan's the chance to interact and some of the stories are heartbreaking to read.
I like many other people with Marfan's cannot get straight answers from our GPs because they don't know too much about the condition, if anything at all. They rarely see people with it, so it is understandable that they can't give too much advice. But it is hard and frustrating when you just want a straight answer. This has left many Marfan's sufferers feeling isolated and invisible.
Which is why I want to look at ways of making more people aware of Marfan Syndrome. I am looking to form a social enterprise and donate all profits to Marfan's charities to help them with increasing awareness, which I think is one of the most important things right now, as well as more research. Sufferers want to be acknowledged and heard rather than feeling like they have been forgotten about.
For now I have set up a fundraising page to raise money during Marfan's Awareness Month, with all funds raised going to the Marfan Trust.
It would mean a lot if each and every one of you could help by donating to my fund raising page:
https://www.justgiving.com/marfanawareness
And if you could help spread the word that would be amazing. It is about time more people become aware of Marfan Syndrome and I will do all I can to make this happen.
I suffer from a rare disorder called Marfan's Syndrome.
Marfan's Syndrome is a genetic disorder that affects the connective tissue of the body in multiple ways but primarily the skeleton, heart, blood vessels and eyes. Unfortunately there is no cure and treatment is limited. Because it is a rare illness facts are limited, which makes helping those with the disorder extremely difficult.
This month is Marfan Awareness Month, which is why I have decided to talk about having Marfan's now. Mainly because there is very little awareness other than amongst those who have the illness and I am looking to do my bit to change that now.
Living with Marfan's is unbelievably difficult. Every day there is pain of some kind. For me it is skeletal pain. Walking, sitting and lying down can all be agonising. The pain level varies but it is always there. Day in day out. There's no break from it at all. There is a limitation to what I am physically able to do and that is incredibly frustrating.
Not knowing what is going to happen to the body next is a constant worry. I just get over one thing and then something else will happen. It is mentally and physically exhausting to have to keep dealing with these health problems, and the spectre of something else cropping up at any time.
In comparison to some my pain is not too extreme but it's bad enough. Places like Facebook give people with Marfan's the chance to interact and some of the stories are heartbreaking to read.
I like many other people with Marfan's cannot get straight answers from our GPs because they don't know too much about the condition, if anything at all. They rarely see people with it, so it is understandable that they can't give too much advice. But it is hard and frustrating when you just want a straight answer. This has left many Marfan's sufferers feeling isolated and invisible.
Which is why I want to look at ways of making more people aware of Marfan Syndrome. I am looking to form a social enterprise and donate all profits to Marfan's charities to help them with increasing awareness, which I think is one of the most important things right now, as well as more research. Sufferers want to be acknowledged and heard rather than feeling like they have been forgotten about.
For now I have set up a fundraising page to raise money during Marfan's Awareness Month, with all funds raised going to the Marfan Trust.
It would mean a lot if each and every one of you could help by donating to my fund raising page:
https://www.justgiving.com/marfanawareness
And if you could help spread the word that would be amazing. It is about time more people become aware of Marfan Syndrome and I will do all I can to make this happen.
