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43 Tatjana
tvdkrabben@hotmail.com
Location: the Netherlands
IP: 82.92.149.78
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 Wednesday 25-Jan-12 10:13:30 CST   |
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| Seeman mentioned that she thought the special lipoedema surgery seemed regular plastic surgery to her. She's right! But you were to explore that, Germany is not a bad place to start from. I had liposuction for medical reasons myself and felt I needed to travel to Germany to get it done properly for a affordable price. |
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42 Jade
jade05@tiscali.co.uk
Location: England
IP: 88.110.121.14
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| Wednesday 25-Jan-12 07:32:49 CST |
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 Hi again, I am sure that those of you who know you have had lipedema for some time will resonate with my words. I have written above so I will be brief.
Although not new to having huge legs, dieting and exercising like crazy, visiting my doctor etc., I have only just discovered that I have lipedema. For years I have looked for solutions, observed my own body and done everything I could to slim my legs. I have suffered stares, insults and comments telling me to diet. The insults that hurt most came from my DH, but even my parents kept on at me to diet. I know that my parents loved me and they were just trying to get me to be slim for my health. For years and years I have kept my legs covered up. So, all this agro, but I always had the hope that I could do something about it. Maybe the next diet would get my legs slim. Surely, something will work. Then, I discovered that I have lipedema and again started to search the net. What have I discovered .... that it is incurable. Over the last few days I have realised that this is devastating news. Before, when I thought it was just big, fat legs, I clung to the hope that next time the diet would work. Now, I feel as if I have been hit with a sledge hammer and that all hope has been knocked from me. I find tears welling up in my eyes which sometimes spill down my cheeks. I am normally so positive about finding solutions. I have been swinging backwords and forwards from bringing in even more positivity and determination to a feeling of despair. However, I am not one to give in and I know that the positivity will overcome the feeling of despair. Because I know that in the past I have done well on eliminating grain and sugar products, I have returned to that way of eating. Having also read in your article that this is the best way to eat, it confirms my own findings. Of course, I only thought I was battling fat; not lipedema. I am going to try some of the products you have mentioned. I am also interested in more information about the sling you have invented and being able to eat all kinds of foods.
This is not meant to be a message of doom and gloom, but one that illustrates who it feels to find out that lipedema is incurable. My own personal belief is that anything can be healed with the right knowledge. So, now I will drop the feeling of despair and ride hight on my feeling of positivity.
Thank you so much for your site. I tried to add my story to the blog page, but couldn't quite work out how to do it.
Power to our elbows.
Jade |
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41 Jennie Reen
jenniereen979@gmail.com
Location: Australia
IP: 220.239.63.24
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| Tuesday 24-Jan-12 17:32:12 CST |
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I am so happy to read all the information here, and thanks to Maggie and her family for their efforts in creating this site. Anyone reading this comment, living in Australia, we are trying to start a support group on Facebook. Please feel free to email me. Only those suffering lipodema understand what we go through.
Jennie |
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40 Chris Halen
chrr@yahoo.com
http://community.optionextreme.net/
Location: Eindhoven
IP: 79.224.49.24
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| Tuesday 24-Jan-12 16:41:18 CST |
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| Someone like me, who knows what enormous amounts of work is needed to build up a website like this, will always appreciate your job. |
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39 Jade
jade05@tiscali.co.uk
Location: England
IP: 88.110.118.238
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| Sunday 22-Jan-12 13:26:30 CST |
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Hi, It is good to find your site and read all that you have to say. I have had a problem with my legs for years and my doctor used to say it was fluid or edema. About 18 months ago I mentioned it to my doctor (different one) and he said it was lymphedema and that nothing could be done about it. He then just dismissed it and went on to something else. I saw a site on lymphedema just over a week ago and they also described lipoedema and showed photographs. There is no doubt in my mind that I have lipoedema as the photograph and symptoms matched mine exactly. Like most of you I have spent years dieting, exercising and doing whatever I could to get slim, but my legs remained the same. I have suffered remarks and stares that have devastated me at times. The way we blame ourselves because we think we are just fat is such a waste of time. I now know that this is what my mother and aunt had. I am certain that this is also what my daughter has. We have discussed it and she too thought it was all about having heavy, fat legs.
I was very interested in reading about allergies. Yes, I too have allergies, especially to wheat. I was diagnosed with a wheat allergy years ago. I have tried keeping to a minimum all foods containing flour and sugar. About four years ago I lost a lot of weight on a low carb diet. Well, I say low carb, but I did eat veggies and some fruits. I was suffering from dreadful heartburn and found that I could not eat a slice of toast without bringing it back as acid. I decided to stop eating bread and related products and my heartburn disappeared overnight. I also noticed that my weight began to drop and I was delighted. However, after a while someone said my face looked scrawny and older. I also tried to fit in with other people's eating pattern when we went on holiday with them. My fault because they didn't force me, but we shared a cottage and bought our food together. During that week my heartburn returned and I put on about 7 lbs in weight. Since then I have never managed to get back to that way of eating. I have cut calories to the bone, but still find it difficult to lose any weight at all now. At the moment I am eating crispbreads and pitta breads without any additives. I have only been doing this for about a week so I need more time to see how this is working. However, after reading your article it makes me wonder if it is worth doing this and that it might be better for me to drop the wheat/flour sugar products all together. Has anyone had any success with eating wheat/gluten/dairy free products? Or, is it better just to leave wheat etc out of one's diet?
I say, "Power to your elbow". Thank you so much for your site and the information. I am really interested in finding out as much as I can to heal my body.
Thank you very much.
Jade
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38 Shazanne
sue-bobbywebb@arcor.de
Location: Germany
IP: 82.82.188.173
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| Saturday 31-Dec-11 01:01:16 CST |
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Hallo, I just posted this on Facebook after finding your website:
After yet another night of ruined sleep caused by my painful legs, I went on the web to see if there was anything new out there in the way of research etc. and I found www.bigfatlegs.com
This is their Facebook page - ladies thank you for giving me more hope than any doctor I have seen in the last 5 years (and these are doctors who know about it) !
After suffering from this disease for 30 years (mostly completely mis-diagnosed), squeezing myself into excruciating compression tights, yo-yo dieting and a self-worth that is so low I have felt suicidal on and off for 15 years or more, there is someone out there who is talking about it!
Thankyou.
And for those of you who sneer and think people like myself are just fat and have no self-control, then perhaps it's time to get yourselves an education.
I am British living in Germany where, thank goodness, there is a bit(only a bit though)more awareness than in the UK. I have been told by a Lymphatic specialist that 'surgery is the only option now, but because of my age my skin will be all droopy afterwards, so it's not worth me having it done!! Cheeky B*****d! No consideration of the patients feelings at all, having to live looking like this all these years - MEN!
However I have really let myself go and eaten rubbish for the last 12 months or so because I felt that there was no hope anyway, but now I am really going to try and see how it goes eating your way, and I just want to say thanks, thanks, thanks.
If I can get more information on the surgeons here who perform the 'safer' fat melting surgery I will post back to you.
Regards,Sue  |
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37 Tatjana
tvdkrabben@hotmail.com
Location: the Netherlands
IP: 82.92.149.78
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| Thursday 29-Dec-11 01:38:33 CST |
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| It's hard to change your diet. I'm still struggeling. It's even weird to drop food items you always considered to be healthy. But it does help. Finding a way to exercise also helps. At first you may experience some discomfort, but it's the road to remission and more importantly less pain. Doctors may tell you there's nothing you can do, but you can! |
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36 Di Stanton
ganddstanton@bigpond.com
Location: Aistralia
IP: 101.103.156.111
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| Wednesday 14-Dec-11 07:17:42 CST |
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| Thank you for finally putting up a site that seems to have some acknowledgement of the disease. I am 52 and doctore have been telling me sll my life that I am fat and need to lose weight. I was finally diagnosed in 2008 and have been searchung for a support site ever since. I will be reading your advive in detail and will get back to you asap |
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35 Cj
cjsweetness76@gmail.com
Location: Ohio
IP: 72.255.17.243
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| Saturday 15-Oct-11 02:37:41 CDT |
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| I was so excited to find this website, I found it by googling big fat legs. I have had this problem for years, I knew something was wrong but couldnt find any information on it till now. It is both my legs and I do suffer from tenderness, severe swelling, tightness, and enlarged places. I now have a name for this and the pics I saw on the links really helped. Please keep working on this site, the comments are old and nothing is updated. |
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34 Seemann
Location: Germany
IP: 77.186.86.252
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| Friday 22-Jul-11 10:49:31 CDT |
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Hi there,
I come from Germany and want to know, whether your method of avoiding dairy products and wheat really helped loosing lipedemic -'leg'- fat.
Here in Germany, lipedema isnt well known too, and most of the medical doctors will tell you that you are obese. Only a few specialists knew about lipedema, but they treat you like a lymphedemic patient which doesn't help you. Lipedema is not lymphedema, pushing the lymph-system does not influence the lipedema because the reason for getting fatty legs is not a problem of the lymph system.
Unlike the lymphedema, because you can get lymphedema if your legs become bigger one day.
The only way for an improvement is plastic surgery, some doctors are making money selling "special lipedema surgery" which, in my eyes, is nothing more than normal plastic surgery, but for a medical reason.
There is also no cure and no acceptable treatment in europe for lipedema. I hope we can find a way out of this desease one day.
Beste Grüße!
Seemann |
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33 Joyce
Joyceholden@att.net
Location: USA
IP: 99.183.197.217
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| Sunday 17-Jul-11 14:54:14 CDT |
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| Enjoyed reading your information on this. I confirmed I had lipedema a few weeks ago, with a wonderful doctor who is working on getting a case study going. I have been told for over 30 years it was lymphedema. I am hoping to start a new path to get control of this disease. |
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32 susan taulman
knits2fast@yahoo.com
Location: structure house obesity clinic
IP: 65.9.119.229
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| Monday 27-Jun-11 10:42:07 CDT |
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 I have been so lost, confused and depressed ever swince I was diagnosed with lipedema years ago. I am so happy to know I am not alone in the quest to find understanding and acceptance. I have been a freak so long that I don't know what friendship or happiness is. I have no job and really need someone to commiserate with. My sister Kathy called Maggie just to connect for me. Hope to chat with another sufferer soon. |
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31 Barbara
bj_interior@yahoo.com
Location: Texas
IP: 99.104.252.69
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| Saturday 25-Jun-11 18:57:41 CDT |
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Thank you for sharing what you have learned about this disease. I enjoyed reading about the vitamins and different treatments you and your Mother has tried and what has worked for you. You have given me hope...thank you.
I too was diagnosed with lipedema last year and have had treatment and wraps. I started exercising about 9 months ago with no weight loss but have lost a lot of sweat!!!
Thank you...keep posting for I am saving this address and will be visiting again soon. |
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30 Celia Sparks
celiasparks@saol.com
Location: Durban, South Africa
IP: 41.177.1.88
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| Monday 13-Jun-11 04:02:07 CDT |
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| Well done - this is such a helpful website. |
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29 June Duguid
mjd221@rocketmail.com
Location: USA
IP: 76.168.219.227
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| Saturday 11-Jun-11 15:32:29 CDT |
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Thank you for all your research. I wish I had had a supporitive mother and grandmother at 13. Very important time in her life. I was told I was lazy and ate too much. I did look just like my grandmother but no one thought it could be something else or a family trait especially since my grandmother had 4 sisters with the same problem. I will follow this site. Very interesting.
June Duguid |
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28 Kathy
beaglesrool@gmail.com
Location: Orlando
IP: 198.151.12.8
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| Monday 16-May-11 14:25:46 CDT |
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As I read this article and the Protocol for Remission several things hit home. Fortunately I do have a doctor that cares and listens. He refered my to a lymphedema therapist and she is thinking lipedema. I am very sad and have been weepy for 2 weeks.... but I have hope now. I belly dance, do pilates and zumba. So I am very active and plan to stay that way! I have book marked your site and will take everything posted seriously and try to figure out what works best for me..... THANK YOU ![:']](scripts/guestbook_f0bdb0678f4e0388afbc972bb6409fab/smilies/blush.gif "blush") |
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27 Yolanda Munoz
ymunozglez@gmail.com
Location: Puerto Rico
IP: 67.215.108.89
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| Saturday 14-May-11 23:09:03 CDT |
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| We recently lost our older sister. After her death my niece, who recently graduated from Med School and who cared for her during four months, looked into her conditioned troubled by the doctors indeferance to her hugh lower body that kept growing. Doctor gave up on her and referred her to a hospice to die. She had other complications which I will not go into, to which the doctors call the "perfect storm". It was so hard to see her "grow to death". After that my niece discovered that she, my sister and I all suffer from lipedema. She admits to me that she nevered studied this in med school. We are all so worried and in search for answers. I am searching for someone here in Puerto Rico who can help me learn to control this. Being a "latina", having a heavy lower body is aceptable and even considered sexy. However once you become older, you are "fat, morbid obese and can not control overeating due to frustrations" according to one doctor. Now that I am aware of my lipedema I feel impowered and no longer afraid to speak up in my diffence, however I wish to put this under control before it becomes worse. Any information will be greatly appreciated. This site has given me hope... thank you. |
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26 cyndi
cynthiaboden@hotmail.com
Location: UK
IP: 86.20.143.240
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| Thursday 07-Apr-11 11:19:20 CDT |
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| Found this site while researching. Me & my daughters I believe have this condition, though I don't know of any other relatives affected and doctors here seem not really aware of it - they just say, lose weight and do more exercise! It is very sad as I have never much worn skirts and boots/ clothes rarely fit well. I am borderline obese weight but only size 12 on top of body - nearly all the weight is on the legs. My knees are playing up now and it is a struggle to remain mobile and fit. Hope there will be a cure soon, for my daughters' sakes, at least. It is a horrible condition, embarrassing and painful. |
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25 Geezerita
jan_cunningham@live.com
Location: Hoosick, NY
IP: 69.205.7.241
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| Sunday 06-Mar-11 10:04:27 CST |
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| I am ANGRY! UPSET and GLAD I found out what the hell this is.... I always said I was a GREEK GODDESS - the figure that is. Big heavy fatty thighs with no TONE. Well. Thank you for your advice on the diet - no wheat (makes me feel bad anyway) no sugar - (hard to give up), seaweed ( I love). REducing the imflamation seems to be a key. HOW? I am a least still soft. Have been hard skinned before but am currently soft. Have had Knee orthoscopy on one knee and now the other knee to be done this week. Torn Medial Meniscus. Noticed that when I hurt the one knee the other wasn't as swollen and got better faster. Hmmm Interested to hear the NEW treatments if you have any. Thanks! |
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24 Chris Halen
chrr@yahoo.com
http://www.chaletaire.com/all/
Location: Baden-Baden
IP: 93.193.169.197
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| Thursday 10-Feb-11 18:46:31 CST |
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Wünsche weiterhin viel Erfolg und
Schöne Grüße,
Chris Halen. |
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