For all next weeks I am going to be focusing on what I am thankful for about life. It just seems wrong to gripe or complain during Christmas week so you will all get a break from my whining.Today though I am going to talk about something ironically funny, the TV show House.
One of the things that is difficult about having a rare disease is there just isn't very much information out there about your disease. With this in mind DawnMarie and I have spent a lot of time digging up all the relevant research papers and abstracts that apply to ECD or similar Histocyte disorders (there are very few and their sample size is often very small, 2-3 people). We also bring with us a list of questions, many of them medical in nature, with us when we visit our doctor.
This means I am pretty well informed about ECD. It shocks me sometimes how uniformed some people with ECD are about their own disease. They often don't know about the treatment options that exist, who the doctors are that have experience with this disease, or what even the manifestation of ECD they have is really called. Its quite shocking actually.
So it turns out there is an Episode of House where this disease is addressed. DawnMarie mentioned it to me but said I had to see it if I wanted to know how it turned out. Well I'm stubborn and not really watching TV so I looked it up, the lady dies! ROFLMBO (for those people who don't know this means Rolling On The Floor Laughing My Butt Off). Luckily it is a flashback episode so the second case he sees of ECD he saves the person at the last second. The episode gets good reviews so if your a House fan check it out!
I want to make a T-shirt that says.... so Rare even Dr. House Can't Save Your Life.
I feel like there is some prestige that comes with having a rare disease that stumps Dr. House. Yes I know its just a TV show and everything about it is fake but for some reason it makes me feel proud.
Well there you go my last depressing post for a week. I hope you and yours have a very Merry Christmas.
One of the things that is difficult about having a rare disease is there just isn't very much information out there about your disease. With this in mind DawnMarie and I have spent a lot of time digging up all the relevant research papers and abstracts that apply to ECD or similar Histocyte disorders (there are very few and their sample size is often very small, 2-3 people). We also bring with us a list of questions, many of them medical in nature, with us when we visit our doctor.
This means I am pretty well informed about ECD. It shocks me sometimes how uniformed some people with ECD are about their own disease. They often don't know about the treatment options that exist, who the doctors are that have experience with this disease, or what even the manifestation of ECD they have is really called. Its quite shocking actually.
So it turns out there is an Episode of House where this disease is addressed. DawnMarie mentioned it to me but said I had to see it if I wanted to know how it turned out. Well I'm stubborn and not really watching TV so I looked it up, the lady dies! ROFLMBO (for those people who don't know this means Rolling On The Floor Laughing My Butt Off). Luckily it is a flashback episode so the second case he sees of ECD he saves the person at the last second. The episode gets good reviews so if your a House fan check it out!
I want to make a T-shirt that says.... so Rare even Dr. House Can't Save Your Life.
I feel like there is some prestige that comes with having a rare disease that stumps Dr. House. Yes I know its just a TV show and everything about it is fake but for some reason it makes me feel proud.
Well there you go my last depressing post for a week. I hope you and yours have a very Merry Christmas.
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