A Plan of Action: Need Full Support

Greetings all.

I know i’m still new here, but I have an idea that’s just crazy enough to work. However, i’m going to need some major help to do it.

For the most part, all of us have been supportive to each other, but we’ve all been running to doctors all over ttrying to get them educated on something they should know more about.

In effect, and not to say that nothing has been tried before as individuals or small groups, but nothing has been accomplished in the way of getting the correct attention given to our condition that’s it’s truely due.

This is not a bad on our part, but if it’s figured, then it’s possible that each of our individual cases have been overlooks as minor and stuffed in a dark corner drawer somewhere.

I know this sounds unlikely, but being that I was formerly in the military, and a 71L, I know something about how the govornment really processes paperwork, and what they tell you they are going to do.

The plan I’ve gotten an outline on is very basic, but it’s hairbrained enough to work, if we all push it up through congress. If the plan works, then the Dr. in California, who is currently doing research four all of the DD sufferers, may get an edge to hear the case, if not in an open court, then at least in a close room audition to hear what the good doctor has to say, and be forced to review the medical files, to make her judgement on whether DD really needs further investigation or not.

If we all keep a unified front on the support of the paperwork to the surgeon general, then we might just have a shot at something that might have formerly really only been, what in reality, has only been a dream to us all, from the moment we all knew we were casualties of this afliction.

Real treatment.

So, here’s the idea in general. I’ll be adding in where each of you can help, if you’d like.

  1. Get to all of the different web pages concerning DD. Get them united under one purpose and mindset.

(Each of you in the web pages has contacts on other pages, also in different countries. It may not serve any more purpose than to let the Surgeon General know that it’s not just us in America alone that suffers from DD, and that many could be mis diagnosed. Getting everyone together and sharing information is a must if we are all to find a way to get serious action. It would also help support each other in our own times of uncertainty. We aren’t alone, and in the least, we need to prove this not only to ourselves, but each other.)

  1. Get the awareness level of each other and help propetuate the awareness by sharing information and stories and ideals.

(Sharing our stories and sharing information by sending medical information to the Dr. in California might be a great idea. Getting her the case files, even if Foriegn, might support her claims of a legitimate underestimation to the seriousness of DD to the powers that be. Helping her will only further help us.)

  1. Get hold of that Dr. in Cali and see if she would help support the pettition to the Surgeon General.

(Getting all of the Doctors that are involved with treating each of us might also be a great idea. Getting the support of doctors in with the Doctor in Cali would further enforce the petition to go through. Then there would be both signatures of Doctors and signatures from us.)

3.a. Revise the petition. Add genral and specific information in a formal outfit that would easily be understood by the Surgeon General. Add found data and expound on information concerning DD cases.

The one whom originally wrote the first petition did an incredible job of writting the petition. It states that the problems are pretty obvious, but the seriousness feels a bit understated. I’d like for someone to help me get in touch with the person who had done the petition so that it can be revised in a manner that would not be looked over and set aside.

The importance of this needs to be understood. DD has not fully been recognised or studied enough. I mean, really, for God’s sake, we’re diagnosing ourselves while a doctor oversees us at certain times. The effects on other things, like MS, systic fibrosis, and other illnesses have not be studied in full. We don’t know what this is effecting in full, when or where, nor even what kinds of medications are really doing any good.

All we have is word of mouth to each other, and though that amounts to quite a mountain, it’s a molehill compared to what should be happening on a professional medical level.)

3.b. Add supporting billing by the Dr. in Cali to substantiate the seriousness of the lack of understanding and the need for more critical funding.

(There is a serious lack of funding for the study of DD in generals or specifics. The focus on this might help make a career for some of the doctors. There’s no doubt to which side this falls to. The doctors will get funded, and thier careers from then on might be set in stone.

However, make no mistakes. We will get treated, as a whole body of people who are suffering from the effects of a seriously understudied affliction to the extents of the unknown limmits. I’m certain that all of you would agree to this point.)

3.c. Add in the unfortunate cases of damages caused by not finding the cure, and the addition to the continued support from Ecconomic America by leaving those aside with this detriment to continue drawing SSI and other important social wealths.

(I’d be abashed to say that I’m not looking for the correct compensation myself, but to disclude this would be to tell the Surgeon General that the only thing we’re looking for is a hand-me-out. Personally, I’d like to get back to working reliably to the public and doing the govornment work I like doing as a soldier for the USA. I’m pretty certain the rest of you would lke to begin living a normal life as well.

I’ll make no mistake. This is truely a double edged sword. We’ll have to approach this very carefully to word it right without making it sound like we want hand-me-outs, or sound like we’re trying to anything out of the context of simply getting the serious medical attention we deserve as human beings.)

Adding in that through finding a cure, we all might become more active in helping America financially.

(There’s the double edged sword, but might peak thier interests.)

  1. Add in the unfortunate casualties from this disease/illness and afliction to compound the seriousness of the matter. To include that many others whom share this may be at risk, that the disease is still not known if it’s truely the main problem or if it’s a secondary effect to something more insideous which is comming to roost in the world and in America, that many may very well be mis-diagnosed.

(As lost as I am in the world that we have around us, I’m not so blind as to think there were not ever casualties, those whom have passed on to the good graces of the heavens and peacefull rest eternal. If indeed they did pass away with this afliction, then it’s obvious that we are all, in some way, as loathed as I am to say it, we’re all in danger. Very real mortal danger. Thier deaths could have been prevented by more serious studies, and each loss that continues because of the lack of studies is a loss that can’t be aforded. This can be prevented, but the only prevention will come when serious studies begin.)

  1. Submit it to scrutinisation through the Dr. in Cali and have her revise anything she sees fit. To add in her own criteria for the matter to be adressed properly by the correct authorities.

(Her own medical advice would definately be something we’d need. Also, sending in work with other doctors might help compound the seriousness of the issue. The reviews made by the doctors would be reviewed by the Surgeon General’s staff and compiled into a neat report for ehr, but the sheer amount might be enough to make precedence to the seriousness. Couldn’t hurt.)

  1. Check with my sister to see if I can get her to back me up on sending it to the govenor of Texas, and through the Govenor to the State representative, and hopefully to the Surgeon General.

(My sister works in communications with the City of Farmer’s Branch in Dallas Texas and has ties to the Govoner. I’ll see if there’s a way she can help. Perhapse she could give us advice on what needs be done. This is at least a start.

If anyone has information or wants to help in the process, I am more than willing for any and all help. I do have writting skills, and they are not shabby. I can make things look and sound pretty. Highly detailed and explained in length. My sister makes my work look like a pre-schoolers. No meaning to be modest on her part from me. It’s the truth.)

  1. See if the VA will be willing to back up the cause as a secondary support measure.

(If there are other former veterans, then please send in your support to this cause. Any military documentation will help support the over all efforts to make this matter legitimate. It only further compounds the effect that the matter should be adressed when service members are involved.)

  1. Send it all in Certified mail systems.

(That’s going to be a chunk of change, true, but it will keep the paperwork from getting ‘lost’. If we all keep a good copy, then they can contact anyone’s name who is on the petitions list and get another copy. It WILL tick them off if they’ve lost it ‘acidentally’. And when each of you calls in to see what’s happening, after finding out it’s lost, can easily send yet another copy adressed to thier superiors due to the lack of thier attention to detail. That will also get us more noticed. There is always someone over that person until you get to the Chief of Command. The President. If it doesn’t get that far and there’s no resolution, record phone calls and go to the next step.)

  1. Go public if we have to.

(Getting the news in on this, even if it’s a one shot deal on the Ten o’clock news is something, and the govornment will move. Others will get interested in our welfare. And the govornment, if nothing else, wants to look good in the public eyes. Sad, but true.)

(( Perhapse this could even be a motion to get a great many other highly understudied and misunderstood diseases undrstood. It’s a step, and might be months and years, but it’s something we can try. ))

  1. Wait for results patiently.

(Patients is a viture, as all of our mothers and families tried to instill in us. Still, I know patients run very thin when it comes to getting something done. Still, it can and will get done. All we need to do is wait calmly for the results. Noone wants to look bad when polotics and upper class reputations get involved. Something will happen.)

This is an American Dercums Disease Diagnosis Registry, please all add your names and the required information.

http://dercums_data.tripod.com/registry.html

Cheers,
Yours in lumps
Chez
Australia

You know, it’s kind of funny, I let my brother know about this and he says that perhapse this is my calling in life.

Odd to know that I have a calling and not truely understand that this may be what we were all meant for. Perhapse, in a smallway, it’s encouraging. I hope any of you can draw as much encouragment from it as I do.

I might feel the pains, but more than that, when this train starts to move, I’ll have more hope than I’ve had in a long while. Perhapse you can all take from this a bit of strength with all of you.

I also thought that if any of you have members who would like to have family and friends to support this cause, it would help to have thier names upt on the list.

Thanks once again for your time.

I’d found a vast listing of information, web pages concerning our topic. i thought they might be relevant. I’ll list them here. I’m not good at making links, so, just copy and paste to get to the web sites.

General and Mixed Sites with information on Adiposis Dolorosa:

http://www.careplace.com/group/831?from=search
http://www.emedicine.com/derm/topic839.htm
http://www.emergingworlds.com/ch_conditions_detail.cfm?vPageid=1

57
http://members.tripod.com/~Dercums_Data/
http://www.petitiononline.com/dd969696/petition.html
http://www.dercumsociety.com/
http://www.bluegrassdavinci.com/ODP/Health/Conditions_and_Diseas

es/Skin_Disorders/Dercum_Disease/
http://dercums_data.tripod.com/support.html
http://www.mdjunction.com/dercums-disease
http://www.dercumshope.org/resources.php
http://dercum.dk/dercumeng3.php
http://www.dercum.net/
http://www.lipomaforum.com/


http://www.reumatiker.se/forum/index.php
http://www.marie.hallsten.dk/
http://dercums_data.tripod.com/

http://www.dstressdoc.com/dercum’s.htm
http://www.hon.ch/HONselect/RareDiseases/C17.800.849.077.html

http://www.wrongdiagnosis.com/medical/adiposis_dolorosa.htm
http://www.sjmercyhealth.org/12880.cfm
http://www.cigna.com/healthinfo/nord490.html
http://www.ncpainmanagement.com/LipomatosisDolorosa.htm
http://www.skincareguide.com/gl/a/adiposis_dolorosa.html
https://www.blueshieldca.com/hw/articles/hw_article.jsp?articleId=HWSHC29DER&fromTopics=all_topics&_requestid=66965

Personal Pages.

http://www.nunnie.com/dercums.html
http://en.wikipedia.org/wiki/Talk:Adiposis_dolorosa
http://www.docguide.com/news/content.nsf/news/852571020057CCF6852572F00067DC03

If anyone has something to add to this list, it would be a great way to get started on getting everyoe together. There’s even a few foundations in here that specialise in support for those with our affliction.

Might be a good way on getting people together.

I’m going to be posting at different places to see if I can get this place and a whole ton of others in link with each other. I’ll be posting this plan at any place I can, along with these websites.

We’ll see if we can get something to happen.

Boy, you put a lot of work into this! I think you are on to something. I would contact Dr. Herbst if I were you and some of the other groups. DD should not still be considered an “Orphan Disease”…so many have it. Good luck with all your plans. Some of us are too ill to be of much help but I am sure we will all do what we can. : )