Dercum's Disease Support Group

Hi everyone...

There has been a lot very exciting awesome plans, etc., going on behind the scenes with Dr. Herbst and FDRS (Fat Disorders Research Society), that have been kept on the down low.

Just had another meeting at my house with Dr. Herbst and the Graphic Art Designer which is my brother William.

There has been a small group of patients along with Dr. Herbst, a couple of the top people with FDRS, myself and my brother who have all come together volunteering time, their expertise talents, knowledge, etc., to design and put together the amazing spectacular Dercum's Disease Brochure. Everyone has worked so very very hard it putting this all together and it is finally almost completed! Once the Dercum's Disease Brochure is completed, then the other 4 Brochures will follow shortly for Lipedema, MSL, FML, and RAD. They will mimic the format and general layout of the new improved Dercum's Disease Brochure, but will of course have all the information pertaining to that particular Disease/Disorder Brochure.

We had a meeting yesterday to make some minor adjustments and corrections on the DD Brochure and pick out photos. We need more candid photos of people with Dercum's Disease: faces and a good shot super clear shot of a lipoma on a body part. Anyone who is interested in sending their candid photos for the Brochure, please send me a private message through MD Junction and provide me your email address as to where I can send you a "Consent and Release Form" to be able to use your photos.

This is truly exciting times, because FINALLY a professional detailed Medical Brochure will be available to everyone to provide to family members, doctors, etc., explaining Dercum's Disease, etc. We all have been working so hard since the very beginning of the year and finally all the hard work and sacrifices are beginning to pay off. So excited and happy for us all! Even the new Logos have been designed and approved for the Brochures, etc.

There is so much more going on to benefit ALL patients with Fat Disorders, because as we know, it is NOT at all about being what some people or what some medical professions with ignorance are telling us, that it is about being "fat". This is such ignorance and insult to this horrible dreadful debilitating disease.

Wishing you all a fantastic, blessed and be well day my DD friends! :O)

Can't wait. I am so tired of trying to explain over and over what I'm dealing with. It would be great to have something to just hand them and tell they to read for themselves. Keep us informed! And THANK YOU ALL for all the hard work I know must have gone into this.

Great News....THANK YOU ... THANK YOU ...THANK YOU to everyone who is working hard to make this happen. It will be such a helpful tool

Good morning LuSenda and Margie

Your so very very welcome and I will definitely give your support and gratitude to the group who has worked so tirelessly on these brochures, etc.

I promise to keep you all posted on the progress and completion of the brochures, etc.

Such exciting times as I mentioned and so very happy for everyone.

By the way, I finally get to have my MRI and MRA with contrast of my entire brain and neck towards the end of the month. Also we found a place that has the open machine instead of the tunnel tube. They said the test will take about 2.5 to 3 hours. Maybe now, I will find some answers as to why my upper body area: shoulders, neck, head, mouth, jaw and eyes have involuntary jerks and spasms and it also might shed some light as to why the lower half of my body does this too.

Take care and have a gorgeous day!, and may it be filled with many wellness blessings :0)

Myladylumps....I can't wait to get the brochure! Thanks to all of you. I sent my photos..some people may turn to stone if they view them. The person who works on these photos really deserves a hand of applause! Feel free to list MDJ as a support group on the brochure if you wish. We are all just hanging out here waiting for you to come and tell us how you are doing! Good luck with the MRI. A pre-test valium would be nice. Hugs, Grandma Sylvia

Thank you so much for doing this! Let us know when we can get them and how to contribute to the cost!

Joey

Hi Grandmasylvia....OH! I am so very very happy to hear from you.

Thanks for the photos and by the way, where did you send them sweetie?

The DD Brochure looks so so amazing!, and they are still working on photos being implemented into the Brochure. I cannot wait for it to be available and to share it with you all!

Thanks for wishing me luck on my MRI/MRA. I have that test coming up tomorrow. They said it will take a minimum of 2.5 hours or more. Also next week, I should be having an EKG and ECHO testing done for my heart. I have a mitro valve prolapse and my heart has not been checked out or looked at since my early twenties when I was first diagnosed by the Cardiologist. Before I can take the Methadone, the Pain Specialists wants me to have this testing done on my heart, just to be safe, since Methadone can really affect the heart and there needs to be precaution first.

Yep! Oxycotin combo with Percocet and the Oxycotin did not work at all and I was taking a double dosage and that was costing me $540 for one months supply. So originally the Pain Specialist thought the Methadone was a better fit and that is what he originally wanted me to take, but I insisted on the Oxycotin that to me had less serious side effects than Methadone. I am so bummed most of all that the Oxycotin did not work, then the expensive cost at $540 for one months supply. The Methadone is under $8.00, much better being less expensive, but now I have to take another test....aye caramba!

Miss you with all my heart! Hopefully these tests will be the last I have to do in a long long time and I can get back to some sort of normalcy.

I truly miss you all very very much! Take care sunshine....I promise to keep you posted and please tell me where you sent those photos of you?

oxoxoxox!!! have a beautiful blessed day!

Hi Joey

Awww...thank you so much and we are all doing this work voluntarily. No one is getting paid and we who are volunteering thus so far are paying for things ourselves.

I promise you I will keep you all posted when they are ready and will also share with you what they will look like. In addition, once they are printed in bulk and are ready to order and retreive, I will give you that additional information as well.

take care my DD friend and be well. :0)

Hi Ladulumps,

I a;ways read your posts and you are so informative. So grateful for the work that you and Dr. Herbst and the others have done Thank you, thank you all!

I am from Texas but if I were closer I would have loved to help with it. I hope your MRI went well and will find out more about your problems. Finally, and so gratefully, I have made my first appointment with Dr. Herbst. It's coming up in early July. Can't wait!

Thanks again to all who helped out on the brochure!

Lumpysoftee

My Dear Ladylumps..Of course I also have mitral valve prolapse..gotta always have everybody's symptoms. I sent the pics to where our beloved Damien told me to so I hope they did not fall into the wrong hands! I put them on a disc...and mailed that. Someone could make a fortune selling them to Playboy! I need to get a lab request from Dr Karen for the specific lab tests she wants me to have. She gave me one before in Chicago but it was not specific enough for my local lab..my rheumy tried to write an order but that would not do either! I know you have been tested to death and I want to contribute my lab work also. I am so excited about the brochure. Thanks so much for all your personal sacrifice and hard work. You are helping many. Love & Hugs, Grandma Sylvia