Happy Rare Disease Day!
Hi guys. Today is Rare Disease Day!
[video] https://www.youtube.com/watch?list=P...&v=CLs5Q1XUiUg[/video]
So what is a rare disease?
Well you can find all sorts of info here on the Rare Disease Day site, but in short a rare disease is a disease that isn't very common. They can vary a lot from annoying to life threatening, but one thing they will often share is a lack of knowledge about them. They can be hard to recognise, hard to diagnose and hard to learn to live with or fight against. All in all they're pretty frustrating and some more awareness could mean big things not only in terms of medical care, but the day to day lives of people living with them.
And why is awareness so important?
Besides it being able to inspire and fund new research that could help with these diseases, awareness on even an individual level can make the lives of people with these diseases a bit less isolated and challenging. A difficult situation is a whole lot less difficult with a little support from the people around you and that can include some really simple things from strangers.
If you want to know just how meaningful a bit of awareness can be, look at the people it helps. Have an explore online of some people's experiences. Or just have a think about a time in your life that something little has meant a lot to you. Maybe a friend listening to your worries or a stranger helping you lift your bag onto the bus. Little things can mean a lot and being a bit more aware of the issues some people may be facing opens up for more little things.
In the spirit of spreading awareness, this thread is here for just that:
Do you have a rare disease or condition or know somebody who does?
Are there any things you would like to ask?
Do you have any info or inspiration to share?
Post it all here!
The definition of a "rare disease" isn't terribly obvious so don't worry about that. This is all in the spirit of spreading awareness and being supportive. I'm not going to tell you off because something isn't rare enough and there are a lot of more common conditions that aren't that well known about either.
1 in 20 people will live with a rare disease at some point in their lives and the aim of today is
to spread some awareness for rare diseases and what they can mean.
to spread some awareness for rare diseases and what they can mean.
[video] https://www.youtube.com/watch?list=P...&v=CLs5Q1XUiUg[/video]
So what is a rare disease?
Well you can find all sorts of info here on the Rare Disease Day site, but in short a rare disease is a disease that isn't very common. They can vary a lot from annoying to life threatening, but one thing they will often share is a lack of knowledge about them. They can be hard to recognise, hard to diagnose and hard to learn to live with or fight against. All in all they're pretty frustrating and some more awareness could mean big things not only in terms of medical care, but the day to day lives of people living with them.
And why is awareness so important?
Besides it being able to inspire and fund new research that could help with these diseases, awareness on even an individual level can make the lives of people with these diseases a bit less isolated and challenging. A difficult situation is a whole lot less difficult with a little support from the people around you and that can include some really simple things from strangers.
If you want to know just how meaningful a bit of awareness can be, look at the people it helps. Have an explore online of some people's experiences. Or just have a think about a time in your life that something little has meant a lot to you. Maybe a friend listening to your worries or a stranger helping you lift your bag onto the bus. Little things can mean a lot and being a bit more aware of the issues some people may be facing opens up for more little things.
In the spirit of spreading awareness, this thread is here for just that:
Do you have a rare disease or condition or know somebody who does?
Are there any things you would like to ask?
Do you have any info or inspiration to share?
Post it all here!
The definition of a "rare disease" isn't terribly obvious so don't worry about that. This is all in the spirit of spreading awareness and being supportive. I'm not going to tell you off because something isn't rare enough and there are a lot of more common conditions that aren't that well known about either.
(edited 6 years ago)
I have one definite on the rare diseases list, but I'm not sure it's so much a disease. I'm havea n appointment in May as well with a rheumatologist as it's thought that I may have had juvenile onset rheumatoid arthritis which is also on there. My definite, Marcus Gunn Phenomenon (MCP), generally doesn't affect me too much (to my knowledge), but I am one of the lucky ones. Many get horribly bullied for having it. The only thing that scares me about it is my eyesight. It's not very good and is much weaker in that eye and has been progressively getting worse. They can't tell if it's because of the MCP or if it's just normal. If it's normal, it should stop right around now. If it's the MCP, it might not stop. It's annoying when I go to the opticians and they don't know what it is, purely because they're never heard of it because it's so rare. It's good when I go to the opthalmologist at the hospital with it though because they get all their students in to see it because apparently it's a once in a lifetime opportunity. I've never met anyone else in real life with it. For the first 6 years of my life I had to have regular hospital appointments to monitor my eyesight and I had to wear a patch for a while too. Now it's more of a party trick, I just have to hope that they do more research on it and discover whether it will cause further deterioration of my eyesight or not and anything else
Original post by Tiger Rag
I have a few rare diseases. But I am waiting for them to see if they've even diagnosed me right with one of them first...
Oh dear. That sounds like it could get complicated. I've seen a few cases where diagnosis are questioned or changed. Seems when you have something rare or not well known about it can come down to opinions more than anything with multiple things kinda during the bill and just picking one. One of my things has no tests or anything so I just have to trust the word of a guy who guess based on symptoms.
Hope it all works out one way or another.
Original post by Kindred
Oh dear. That sounds like it could get complicated. I've seen a few cases where diagnosis are questioned or changed. Seems when you have something rare or not well known about it can come down to opinions more than anything with multiple things kinda during the bill and just picking one. One of my things has no tests or anything so I just have to trust the word of a guy who guess based on symptoms.
Hope it all works out one way or another.
Hope it all works out one way or another.
Thanks. I was pretty much symptomless until I was about 15. I then started losing my colour vision, which I hope has finally stabilised. Will hopefully find out within the next few months what the proper diagnosis is. Strangely, one made the diagnosis and another doctor asked me some years later if I knew I had the current diagnosis.
I do have a friend whose daughter has a rare disease called Rett Syndrome. It's a progressive disease that causes the loss of things such the use of her hands, speech and her ability to walk. She also has Epilepsy, which they're struggling to control.
Original post by Tiger Rag
Thanks. I was pretty much symptomless until I was about 15. I then started losing my colour vision, which I hope has finally stabilised. Will hopefully find out within the next few months what the proper diagnosis is. Strangely, one made the diagnosis and another doctor asked me some years later if I knew I had the current diagnosis.
I do have a friend whose daughter has a rare disease called Rett Syndrome. It's a progressive disease that causes the loss of things such the use of her hands, speech and her ability to walk. She also has Epilepsy, which they're struggling to control.
I do have a friend whose daughter has a rare disease called Rett Syndrome. It's a progressive disease that causes the loss of things such the use of her hands, speech and her ability to walk. She also has Epilepsy, which they're struggling to control.
Good luck with that. I hope it has stabilised and that you get that proper diagnosis.
That must be really difficult. Best wishes to them.
Original post by chelseadagg3r
It's good when I go to the opthalmologist at the hospital with it though because they get all their students in to see it because apparently it's a once in a lifetime opportunity.
This sounds familiar. I always get seen by the students at the opticians who are always fascinated (for want of a better word) by my eyesight.
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