Archive for Rare Disorders
Have you noticed the beautiful artwork that we have been using as an icon on all of our announcements for the 3rd Annual FDRS Midwest Conference, taking place April 29-30 in Elk Grove Village, IL? Have you wondered who created this beautiful imagery? Have you speculated on what what it might mean?
The artist is Anna Hogbin, of West Virginia. Although Anna has spent her career as a professional counselor, she is also an accomplished artist, having won regional and state-wide awards in West Virginia. Her beautiful art is a personal passion and a form of therapy for her, and most often she concentrates on doing florals.
Anna likes to call this piece “The Lumpy Circles of My Life.” It is an abstract piece that started when she and Read More→
This page contains all the information you need to learn about and register for the 2011 FDRS Midwest Conference, scheduled for April 29-30 at the Sheraton Suites Chicago, in Elk Grove Village, IL (near O’Hare international airport). If you have one of the painful fat disorders, suspect you do, or care for someone who does, then this is a must-attend event for you. This is expected to be the largest gathering of fat disorders patients ever, with world-renowned experts sharing research results and answering your questions about Lipedema, Dercum’s Disease, Madelung’s, Familial Multiple Lipomatosis, and Lipo-Lymphedema. We expect this conference sell out quickly (max # tickets is 160), so don’t wait to register!
Happy New Year, everyone! Were you able to stick to the RAD diet over the holidays? I have to admit that I gave into temptation more than a few times…cookies, candy, and even some bacon and ham. But, as those of us with Dercum’s or Lipedema, or one of the other rare adipose disorders know, you just re-commit to the eating restrictions and start fresh with the next meal. That helps to bring the inflammation back under control so you can continue on your long-haul journey of managing your health. So let’s start off the new year with some new recipes! Read More→
Here’s a great dinner recipe that is easy to make, is low in fat, and is loaded with Mexican-inspired flavor. I adapted it from a Better Homes & Gardens recipe to make it more RAD diet compliant. You can use whichever type of chicken you prefer, but I use 6-8 small boneless, skinless chicken breast pieces that are about one serving each (about 3-4 oz. each). This is one of those dishes that tastes better the next day, as the flavors blend, and is also great for freezing off portions for later use. Read More→
One of my favorite things about this time of year is that sweet potatoes are in abundance and on sale! I always stock up on fresh sweet potatoes or yams and make them many different ways. They are loaded with all kinds of good vitamins and antioxidants, including in the skin. I have to tell you that I have never been a fan of candied yams; they are too sweet (even though I love sweets) and then there is the whole marshmallow controversy (with? without? full size? mini? who wants to get in the middle of that?). Since getting diagnosed with Dercum’s Disease and being more vigilant about my diet, I look for ways to enjoy all the natural goodness of sweet potatoes, without coating them in loads of butter or sugar. Read More→
There’s an exciting new study out on Lipedema from Dr. Stefan Rapprich and his colleagues at the Department of Dermatology, Darmstadt Hospital in Germany. They report that the most effective treatment for Lipedema is Tumescent Local Anesthesia Liposuction using a vibrating microcannula. Read More→
…Or How Do You Get Along in Life When All You Really Want to Do is Stay in Bed.
It’s really a struggle to stay positive when you have a chronic disease, such as Dercum’s, Lipedema, or one of the other fat disorders. It morphs your body into a shapeless mass of painful lumps, makes it sweat with the slightest effort and hurt with every move.
You look into the mirror and wonder why bother? I can’t do anything anyway without paying a painful price for my efforts. So, that’s the reality of life with a rare adipose disorder (RAD) but life still goes on and you have to find a way to move along with it.
What do you do? Read More→
A fundraiser to accelerate research for Dercum’s Disease, Lipedema, Madelungs and Familial Multiple Lipomatosis—RADs or Rare Adipose Disorders, as we call them— was held on September 11, 2010 in Canadian, Texas. The event was hosted by Kristi Lowery, Fundraising Chair for FDRS, and it was a huge success! Several FDRS board members traveled long distances to attend and meet face-to-face for the first time, since we all live in different cities around the country. Outgoing President Sue Grimshaw also attended and handed over the gavel to new President Tina Tranfaglia. It was sad to have Sue leave us, but we all enjoyed our time together. Read More→
Having a fat disorder makes life challenging in many ways. There are constant decisions to be made every day with regard to activity levels, pain management, and food choices. The recommendations we hear in the mass media about maintaining a healthy lifestyle sound intriguing, but all-too-often that advice is not good for those of us with rare adipose disorders (RADs). That is thought to be the case with soy. Read More→
Hi everyone! I hope you are having some success sticking to the RAD diet and feeling better because of it. There’s nothing better than chili in the Fall, is there? Well, since we can’t eat beef, I have adapted a recipe for White Bean and Chicken Chili to be (mostly) RAD compliant. If you use coconut oil in this one, you will get a Thai flavor profile, because of the combination of hot pepper and coconut. Add a little fresh cilantro on top and it will taste authentic Thai. This is also a great way to use up leftover rotisserie chicken. Here’s the recipe: Read More→