[Lipedema] Comparison between normal fat vs. lipedema fat

I know this is hard to look at, folks, but this is how Lipedema affects women like me who have it. Many women who have this aren't even aware of it. We MUST make people more familiar with rare, genetic disease so women get the diagnosis & treatment they deserve!

Connective tissue & cell walls are up to several hundred times thicker in people who have Lipedema. Again, there is NO cure at this time, so you can only manage it as best you can.

Hopefully, there will be a cure in the near future. I do not want to have this disease progress to the stage where I might lose mobility or have my legs amputated!

To find out more info about Lipedema (known as Lipoedema in the UK) and my personal journey with this disease, please visit my blog Lippy Legs & All at http://lippylegs.blogspot.com

What's an uncommon disease some women have, but they may never know about? Lipedema. Time to raise awareness!

This is not about writing per se, but the topic is connected. I've been writing about my journey with this disease on my blogs for nearly a year. I may expand those writings into a non-fiction book. Not sure yet.

Anyway, this is important to me, but even MORE important is spreading the word so women who might be affected can seek diagnosis and treatment.

Only 11% of women have this disease, so it's not common; however, for those who have the disease, it can be devastating -- especially to the psyche. That's where it's hurting me the most, in fact. I'm blessed to have a husband who loves me and is with me every step of the way.

I was diagnosed almost a year ago, thanks to Dr. Boyce & Penrose Hospital Rehab Services. Wish it had happened sooner, but I guess I was lucky to get a diagnosis. NOTE: Lipedema is NOT the same as obesity. You can starve yourself and you will still have Lipedema. It's a genetic disease that's incurable.

Without the Affordable Care Act (ACA), I would've probably never gotten diagnosed or been able to receive treatment and info on how to manage this disease. Thanks, Obama!

According to the article mentioned below, "Lipedema is inherited, and puberty, pregnancy and perimenopause exacerbate the process. Treatment is compression therapy and liposuction."

Lipedema cannot be cured by diet or exercise. Symptoms include bruising, tenderness, swelling, and heaviness in the affected limb(s).

In the article, Dr. Mark Smith said, "Most patients don't even know they have lipedema. I have seen women break down in tears once they receive their diagnosis, because their whole lives they've been told they're fat and they're not exercising; not eating right. Meanwhile, they have a condition that's not as simple as diet and exercise."

'Fat Disease' Puzzles Female Sufferers

http://www.clickorlando.com/news/fat-disease-puzzles-female-sufferers/33505556

 

More thoughts about suffering from Lipedema

Just found a page where a lady who has Lipedema is having her 6th surgery to keep from progressing to Stage 3.

I'm at Stage 2, and I'm horrified at what Stages 3 and above look like. Right now all I can do is MLD (Manual Lymph Drainage) and compression garments. But I doubt our insurance would pay for that many surgeries, if any. I wouldn't WANT to get to the point where surgery is the next step, but this disease is so insidious in its progression that it could happen.

I'm sure it's a drag for some people to read these posts because it doesn't impact their lives. Let's be honest: if it doesn't affect you, why should you care? But I have to talk about this, even if it's to myself. I think about this disease all the time. Mainly because I see what it's doing to my lower legs on a daily basis. I hope I can stay at Stage 2. I can't go backward. I can only hope to stay where I'm at. Yes, I'm afraid.

Thank goodness I have a loving husband who says he'll be there with me no matter what happens. He loves me for me, and that's a rarity these days -- or so it seems.

Stage Two and Holding, So Far

Forgot to add that on Monday I finally remembered to ask my lipodema/lymphedema therapist what stage she thought I was in. She said that, based on the clinical signs and her experience, I'm at stage two. I told her I thought so as well, based on the photos and info I'd read on my own. I told her I did NOT want to progress to stages three or four (not gonna lie, stage four horrifies me). Her eyes widened and she said we didn't want that, which is why it's so important to be faithful with the Manual Lymph Drainage(MLD)and compression garments. So, it's official. I'm stage two. I'll take it. Better than the other alternatives! Just wish I'd caught this while I was in stage one, but that rarely happens.

Lipedema/Lymphedema Therapy Update—November 8, 2014

Meant to post this before now, but lotsa stuff going on. Visit with my physical therapist for Manual Lymph Drainage (MLD ) went well. Overall, my lower limbs are down in size and she's pleased with how compliant I am with following her recommendations. She hasn't measured me yet for my permanent compression stockings, though. I thought it would be this week, but she wants to wait another week or two.

I want to recognize my beloved husband for going with me, faithfully, to every appointment and being there in the room when everything takes place. I couldn't ask for a more supportive husband! I'm still bummed that what I have is not curable, but my therapist and my husband keep me positive. He reminds me that I'm beautiful and that my condition hasn't diminished his love for me one bit.

So, I have two visits per week, on average, and my therapist has 24 years of experience treating patients with lipedema & lymphedema. I'm in good hands -- literally!

A couple of things I have to watch out for the rest of my life: one, I can't do hot tubs anymore (not that I did them a lot, but still); two, I have to be careful when I travel by plane due to the effect it can have on my calves, ankles, and feet. It's also recommended that I use an electric shaver instead of razors to shave, since cuts, punctures, scratches all spell bad news in a limb with lipedema/lyphedema. In the scheme of things, it's a day-by-day situation.

A friend of mine asked if there isn't a medication I can take to help. The answer is no. There is no medication that can help, and diuretics, diet, or exercise cannot cure my conditions. The cause is unknown, and lipedema is classified as a rare disease.

Anyway, just an update because Thursday's visit was a good one. I think she said my lower legs were down an inch in some areas, which is fabulous. Too bad they won't stay there permanently, but as long as they're not going up and heading to the next stage, I consider it a victory. I do NOT want to end up in Stages 3 or 4.

Life Changes: A Double Diagnosis of Lipedema & Lymphedema

About a month ago, I learned that I may have lymphedema, which means your lymphatic system is compromised or blocked in some way. Earlier this week, after visiting a local outpatient rehab lymphedema clinic, I learned that I have both lipedema *and* lymphedema.

Both manifested later in life; I'll be 50 in December and so I didn't notice any problems/symptoms until I was middle-aged. Up till then, nothing seemed amiss and everything looked and felt normal. In effect, I received unexpected news and it was a double whammy; not just one issue with my lymphatic and vascular system, but two. Neither can be cured, only managed.

I am just now learning about these diseases and they will be a part of my daily routine for the rest of my life. Since most people haven't heard of them and don't understand them, I wanted to share the experience with friends, family, and whoever else may find themselves in the situation I am now.

A friend of mine wanted to know more so she could understand, so I wrote the below-posted information to help explain it as best I could. Then I realized I might as well post this info on my blog to let people know about this new development in my life and to also inform those who may want to know or may need to know more about lipedema and lymphedema.

As I told my friend Mari on Facebook, "Lipedema is rare and it's not caused by what you eat or how much you weigh. Overeating or improper nutrition do not cause it; therefore, losing weight or restricting calories will not affect the diseased tissue/fluid. In fact, I can attest to this, since I've lost well over 50 lbs over the past few years. It does not matter at all. Anorexics can get lipedema, in fact. So when you say 'care for your body,' that care means keeping the skin moisturized and protected so bacteria can't get in dry or cracked skin or feet. Otherwise you can get cellulitis, and that can be deadly. About 27,000 people a year die from that.
Second, the lymphatic system only moves one way—up. That means blockages or a compromised system can't move the lymphatic fluid properly, and that's a big problem! So, care also includes getting the fluid moving through special massage techniques, as well as compression to keep the lymph from settling in the lower limbs where infection can develop.

Manual lymph drainage is necessary (for a person like me who has lipedema and lymphedema as well.) The vascular system and lymphatics are compromised or damaged. Penrose rehab wants me to come in for manual drainage twice a week, but they aren't sure if our health insurance will cover it. They recommend twice a week for that, and compression garments and bandaging daily, from the time I get up to the time I go to bed (at least 12 hours a day). If insurance doesn't cover the therapy, then it's likely I'll have to try and learn how to do it myself (and I'd prefer an expert with years of training do it instead, if possible.)

Neither conditions can be cured or treated with diuretics or medicine. It will only become more severe. There's no way to completely stop it. So, no, I will not be completely healthy in this regard, regardless of what I do. I can only hope to delay it from advancing to a more severe stage. It already affects my mobility right now, so I just do the best I can and go from there.

Bruising is common, and these conditions can worsen with activity and warm weather. Vigorous exercise—especially without compression stockings—will exacerbate the problem and make things worse. So, as you can see, these are tricky conditions that become progressively worse. The best hope is to try and manage them as best as possible. I know this is a lot of info, but there's a lack of knowledge about these conditions, and it's important (at least for me and others suffering from these conditions) that people are educated and don't make assumptions or think it's simply, "Well, lose weight and exercise more." Nope! If it were only that simple! I can get down to a size 1 and I'd still have it. That's why one physician I read called it a "rare and devastating disease," with the psycho-social aspects particularly hard for patients. I was recently diagnosed, but I'm already having issues with it. Having understanding and supportive friends—such as yourself—makes a huge difference for patients dealing with lipedema/lymphedema.

As I said, doctors and researchers don't know what causes it, but they believe it's genetic (hereditary) and also hormonal. It cannot be cured, and it's the same for lymphedema. Both affect your mobility and can result, in severe cases, in being wheelchair-bound or, in the extreme case, amputation of the legs. Because I've been pro-active in getting a diagnosis and treatment, I don't expect the latter two to happen. The person affected must follow meticulous treatment. It's not something that can be ignored, because you cannot reverse it; it can only get worse. About 11% of women have lipedema, and rarely do men get it (only 2, I believe, from the articles I read from Dr Karen Herbst, who is a doctor in Arizona and an expert in this field). It's classified as a rare disease, as I mentioned before. For men, almost unheard of!

Paul, sorry I hijacked the thread, but I needed to write this up for my page and my blogs anyway. Might as well explain quite a bit of it now! Thanks for asking, Mari. I went way beyond what you asked, but now you know the gist of it all."