I made a website for dercum’s disease. Well, not really a website, it is just one page. I hope it will show up in search engines eventually. I am listing all the supprt groups and best info pages. I used some of my butterfly photos on it. I had fun playing with it, it has been a long time since I made a web page. I will add your site too Christine (when you have it ready)
Here is the URL if you want to see what I have so far…
Hey Suri, awesome page, can’t wait to see more. I love the colors too. great job. ladymary, Bev
Thanks SuRi…Your web site is great! I love the butterflies and all they represent to me. I wear a butterfly necklace a lot. You are very smart and artistic. I also love your other web site. I am going to figure out how to order some calling cards. I love the three sunflower picture and the dew drop flower…I love a lot of them. You have a purpose for having DD…you can help others through your knowledge and compassion. Hugs, Proud Grandma Sylvia
Suri,
I know of a couple more DD sites, but I won’t post them here. If you write me privately I’ll give you the links.
Hugs,
Pamela
SuRi,
You are such a blast of fresh air and positive energy. I am so excited that you joined this group. I saw your web page, it is so cool. I love butterflies, and like I have told you I adore your photographs. You are blessed with precious gift, thank you for sharing with us.
Hugs and love,
Brennie
Thanks you all, I thought it turned out pretty good. It would look nicer if it didn’t have the ads on the top and bottom, but I am not going to pay for it 
It would be dumb to pay for it anyway since it is just one page with my story on it (eventually I will put my story on it). I just think the more out there with links to DD the better! I read somewhere that DD sometimes starts during a womans menstrual cycle – that is how it started with me and I searched high and low on the web for “leg pain during menstrual cycle” and couldn’t find anything. (and 5 docs looked at me like I was psycho)
I would love those links Pamela, thanks!! I will PM you
Thanks Sylvia for all you kind words! I was thinking of maybe donating the profits to DD research next year (I guess that would be Dr. Herbst. I think she is the only one doing any research) But it would be such a drop in the bucket it might be embarrassing, LOL! I only make 10% on each sale unless the customer comes in through my “free stuff” site (that was the whole purpose to the free stuff site, free stuff is a popular web search, haha) The links there have a * on them that gives me an additional 15% if they click there to get to my zazzle store. AND even if they come in through a link on my free stuff site and then go to someone elses zazzle store I will still get 7% of anything they buy on zazzle. It is sort of complicated, but the price for the customer never changes, just the amount I get from the zazzle site. If I wasn’t so lazy I would make a website and sell the stuff myself and make some real money. I’ve been doing this since July and have sold over $300. worth of stuff, but the percent I get is really low.
Sorry this is so long (AGAIN!)
I’m getting ready to log off here (I have almost completely talked my husband into taking me to see Bevery Hills Chihuahua, LOL - I am a Chi Freak!)
ANYWAY – I was going over the code for my little web page and saw that I had the link for “Medical News Today” messed up (it was going to the dercum society page) ANYWAY-- I fixed it but have been wondering if this is a page you all have read. It sure does paint a much bleaker picture than other DD info. I wonder if it is all true (?)
Here is the link to it
http://www.medicalnewstoday.com/articles/5253.php
Well, duh… I guess I could have just shared the parts that strike me as “not on other DD info sites”
That article says “Many patients will need morphine”.
“All kinds of exercise, physiotherapy etc. make the condition worse”.
“Most Dercum patients must give up their work and will need aids and appliances in their home as well as for getting around”
“Even wearing clothes or taking a shower might be very painful.”
“It might even be lethal if attacking inner organs.”
OH-- and I saw on another site (that I can’t find right now but will share if and when I find it again)— It said that they get in the lungs and heart and cause death. I thought that could not be because it said they “move” to the heart… maybe they meant “develop in”… I know darn well that mine do not move around my body, LOL
Hi SuRi,
I know Dorrit and, unfortunately, everything she said on that page is true. I will add that DD is very rarely lethal, but it can be if it attacks certain organs like the heart.
Hugs and spoons,
Pamela
HI SuRi,
I knew what was alarming you, but it is still all true. I know quite a few who can’t stand the water from the shower hitting their skin. I have personally experienced not being able to have clothes touching me. More than half of DD suffers are disabled. I have been trying to work as long as possible, but the end of working is drawing near for me. Most are on narcotics. Very few die of DD, but it can happen in rare instances.
I hate being the bearer of bad tidings and I don’t like to scare anyone. All we can do is enjoy our goods days and hope we don’t get that bad. Not everyone does.
Hugs and spoons,
Pamela
BTW SuRi,
Can you post the link to your webpage again? I lost it and I need to check and see what sites you already know about.
Hugs,
Pamela
Thanks for being so friendly :) I love you guys :)
I know we discussed this earlier about death from dercums and I think we sort of came to the conclusion that nobody could find any data on the web about it directly causing death. I think Pamela knew of another group that had those facts on it?? I thought when we talked about it before we found that people can die from complications due to dercums (like pulmonary problems)
ANYWAY -- I did find that site I mentioned before -- I do think this one must be in error or maybe I am learning something new (again!)
It says, "Lipomas, "fatty tumors " can be felt in the fat, they are intensely painful, and usually harmless, unless a tumor moves to the lung or heart which can be fatal."
Mine don't travel around in my body, (unless they do it when I am sleeping and then return to home base when I wake up LOL!) Has anyone ever heard of this before? Is it possible one could break free and move to the heart or lungs?
source: http://www.emergingworlds.com/ch_conditions_detail.cfm?vPageid=157
Hi Suri,
I had read this article before, but didn’t notice the word “moves.!” I had never heard the tumors could mive around the body either. Maybe that is a typo? I had thought it could be fatal if a tumor GREW in the heart or lung. Let us know if you see any other articles that refer to our tumors traveling. I don’t believe they do, but I may ask Dr Herbst about it.
Hugs and spoons,
Pamela
Oh I am so dippy it took me a moment to figure out why you couldn’t just see it, pamela… you reply from email. (another “Duh” moment for my today!)
Here is the URL
www.dercumsdisease.bravehost.com
Thanks SuRi,
I looked and you are missing at least 3 support groups, one of them one of the biggest and oldest on the web. I have to go to work now, but I will send you the links privately tonight when I get home. Promise.
Hugs and spoons,
Pamela
Good luck Ben with getting your stuff. I hope it goes smoothly for you.
Thanks Pamela I thought this group was the biggest one online!
OMGOSH! The Wikipedia definition of Adiposis dolorosa has that same phrase in the symptoms!
(Lipomas, "fatty tumors " can be felt in the fat, they are intensely painful, and usually harmless, unless a tumor moves to the lung or heart which can be fatal)
I think this needs to be corrected if not true. Why freak newly diagnosed people out even more with false information!! Wikipedia gives you the option to edit it, but I don't want to edit it since I don't know for sure if the info is wrong. Maybe it should say unless a tumor develops in the lung or heart which can be fatal
Or maybe unless a tumor develops on the lung or heart which can be fatal
Or maybe unless a tumor develops on and presses the lung or heart which can be fatal
LOL, can you see why I didn't edit the wikipedia definition? :)
Not quite, but close. This is one of the newest though.
Hugs,
Pamela
Yes Suri, but Wikipedia isn’t well known for its accuracy. I’ll write Dr Herbst and ask her which is correct, and let you know what she says. Unless she is out of town or something, she usually responds fairly quickly.
HUgs and spoons,
Pamela
I changed the page 2 years ago.
And some jerk removed it. I even added a google search I customized to help people…
If you are too worried to change it, I might.
(add a clause- this info is unverified)