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02/27/2012 09:17 AM

No More Silence From Me

Olivia97
Olivia97  
Posts: 280
Member

Ok, long story as to why, but my son and I are making a very small, and we know it will go no where, but a small short film about chronic illnesses - and HS will be one of them. I have quite a few, and all of my illnesses will be profiled. If you could have 1 thing about HS mentioned, what would it be, and why?
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02/27/2012 01:56 PM
CanFizzle
CanFizzle  
Posts: 1476
Group Leader

I think this is a GREAT idea Olivia & my thought would be that we should never let HS define us as a person! The fact that there is nothing that we can do to prevent it, or to cure it, leaves us "lost" in the medical world & feeling neglected medically. <3 Candace

02/28/2012 10:47 AM
Olivia97
Olivia97  
Posts: 280
Member

That sounds great! What else?

02/28/2012 07:12 PM
canbe
canbePosts: 36
Member

Hi Olivia97,

I love that you and your son are doing this! I would be very happy to spread the word about you film on facebook etc and other media sites. I think you're great! I also agree with Candace's statement. I guess the one thing I'd like people to know about HS would be how terribly difficult it is that this "disease" has no known cause/ cure. How frustrating it is not to know how to prevent the reoccurrences. How painful the occurrences are! How sad it that not one treatment is 100% effective. And how lonely it is to be alone with this "disease"- your parents, friends, even your spouse cab support and take care of you but you have no one to turn to for help... no one. Not one Dr knows difinitively whats what with this disease. After you make the film you should contact the HS Institute- they may be able to use it. Good luck! - Stephenie


02/29/2012 06:17 AM
oregonnative
oregonnative  
Posts: 5766
Group Leader

Hi Olivia, So proud of you and B. for doing this!

If I have to pick one thing it would be to let people know that HS NOT caused by anything they do, so that those with HS symptoms will seek help and not be embarrassed or ashamed. I believe HS in under recognized due in part to sufferers hesitancy in seeing a dr. because of those feelings. Sadly, doctors themselves promote that myth in their ignorance.


02/29/2012 03:03 PM
Olivia97
Olivia97  
Posts: 280
Member

These are all great. I am going to show my HS. All the above the waist ones I mean. It has migrated south, but those I am still a lil too shy about. I am scared to death, but.....this is kinda therapudic for me and I guess my way of helping however I can.

Any and all sugestions, multiple ones, whatever are always more than welcome...keep em coming =)


03/01/2012 11:56 AM
CanFizzle
CanFizzle  
Posts: 1476
Group Leader

I agree Olivia! Laughing The best productive thing that I can personally do for my HS is to be my own advocate & spread awareness myself! <3

03/03/2012 04:45 PM
Olivia97
Olivia97  
Posts: 280
Member

Ok so all of this will be going on my blog...and as you can see by my signature (and thats not even everything) I have more than 1 medical issue.....I am NOT good at titles....any ideas on what a good title for the WEB PAGE would be - it is just a web page, a part of my over all personal blog, about all of my conditions, including HS. I want a title to convey the message of " a lot of rare diseases" somehow. Any ideas?

03/05/2012 12:09 PM
CanFizzle
CanFizzle  
Posts: 1476
Group Leader

How about something like "A Complex Log of One Woman's Rare Disease's"

Just because that pretty much sums it all up, without emphasizing on only one disease and not making it sound "easier" than what you truly deal with on a daily basis. Does that make any sense? HA! Silly <3 Candace


03/06/2012 07:27 PM
Olivia97
Olivia97  
Posts: 280
Member

That would actually be a fantastic description after you click on the page... =)

Thinking something short and catchy for the page title...

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