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11/28/2012 07:44 AM

life expectancy

balloons
Posts: 3
New Member

I have dercum's disease type 2 and 3...I have been to Dr. Herbst...thank God for her interest in this disease...because no one else is other than the sufferers. We do suffer with so much...where are we headed with this? I am currently applying for disability...never thought this would be in my future and this is my first time reaching out to others with this disease...would love to have a phone connection with others so we can share stories....8504491773 thank you..my real name is Debra
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11/28/2012 08:21 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Hi Debra and welcome to the group. I'm so glad that you have seen Dr H. She is wonderful! I don't do phones...but I love to talk to members on here. If you haven't yet I would suggest that you read a few hundred of the past blogs. You will learn a lot that way. Also the articles section above is good to read. Before Dr H we were just a bunch of lost souls wondering around in pain..not knowing what was wrong with us..our doctors too did not know. Then Dr H and laptops came along and we found each other! It was a miracle! Now, you can just search Dercum's or multiple painful lumps and find support and information. We share what we know or find out on here. The main thing that we do is share compassion. Dr H's research is finding out more all the time so the future of DD patients is much brighter. Debra..if you are seeing a psychologist for depression from the pain it will help you disability go through. DD alone is usually not enough....but I think it should be! In the meantime just post any questions or thoughts that you have..We can help you feel better emotionally and you can help us! Keep reading! As far as your question about life expectancy..I am 67 and still around. I have had DD for around 50 years or more. From what I have heard DD people may die from CHF related to our lymph disorder but DD is not given as the cause of death. With the new research and treatments that people are trying I expect that most of the Peeps will live to a normal old age and with a better quality of life than I have had. These are just my personal thoughts. Stay strong. You can handle this! Hugs, Grandma Sylvia

Post edited by: grandmasylvia, at: 11/28/2012 08:29 PM


11/29/2012 08:02 PM
balloons
Posts: 3
New Member

Thank you grandma for your response and words of encouragement..what is CHF?The tumors are taking over ....they are on the bottom and tops of both feet, knee caps inside knee caps are large in size a wrap around the knee to the shin bone...the lumps are lateral..on and beneath both feet, knees thighs, hips , huge ones on my hips , upper ribcage (as big as my fist), elbows, wrists, neck, head,back,..... have had this for a long time but just last july was diagnosed...my ears ring terribly...cant focus,started having breathing issues, memory problems...It is a progressive disease and its all of a sudden progressing and to what I don't have a clue...I realize there is not a cure ....I would like to somehow prepare for what i can..Debra

12/10/2012 04:16 PM
alwaysSad
alwaysSad  
Posts: 11
New Member

I would like some kind of answer to this as well. I know we should read all the websites here but it`s really hard to concentrate for me. This Dercums is so knew to some of us - it seems so mysterious, I do not understand with today`s technology, why more research is being done, and why does it take so long for diagnose, and what exactly is the prognosis. Some of us in Canada, like me cannot afford to go California to see Dr.H.

12/10/2012 07:12 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Hi Debra..CHF is congestive heart failure..I think that means fluid around the heart making it harder for the heart to pump. With DD you tend to get excessive lymph production and build-up so your ankles and legs swell. In CHF fluid accumulates around your heart. According to Wikipedia "CHF is most commonly caused when cardiac output is low and the body becomes congested with fluid due to an inability of heart output to properly match venous return". All of the symptoms you mention are common DD symptoms.

alwaysSad..It takes a while for your brain to wrap around DD. It has taken a long time for me to try and make sense of it. I still learn more all of the time. DD has probably been in your system/genetics for a long time. For some reason it often starts at puberty but does not get really bad until after menopause. Mother Nature only intended for us to live until about that age but with improved medical treatment and living conditions we now live until twice that in many cases. We should expect that some of the bodies defenses and systems start to fail then. I believe that hormones have a place in causing DD type 1 and 2 to become active. This is just a theory. I hope that medical research picks up now for rare diseases as medical knowledge increases. It is frustrating to finally find a name for what you are suffering from.. only to be told that we don't yet have a cure. I would ask your doctor if they are willing to try and treat you and find out more about DD. Some doctors will and some won't. It is a difficult situation to try and tell doctors anything as they think that they know a lot more than we do and don't appreciate the input of the patient. You just need to find a curious doctor who wants to learn more so they can help their patients more. I agree with you that it is a shame that more isn't known and more research isn't being done. That is our job..trying to further knowledge and get more research dollars. A lot of people are in the same fix with other rare disorders. There are just not enough research dollars to go around. Just recently I and other group members sent our stories to NORD (The National Organization of Rare Diseases) asking for a share of research funds. I haven't heard anything back on that yet. We will keep fighting the good fight. I do see a lot of progress compared to a few years ago. Stay strong! Hugs, Grandma Sylvia


12/10/2012 11:47 PM
alwaysSad
alwaysSad  
Posts: 11
New Member

Hi GrandmaSilvia, thank you for your compassionate, and thoughtful, and informative answer to my questions.

I am still trying to wrap my brain around the idea of Dercums. My brain fog is so bad lately, I sometimes feel like I have dementia or something. Thanks for your expertise. Love you all!!


12/15/2012 08:30 AM
Tala77WOLF
Tala77WOLF  
Posts: 84
Member

I am confused?! I thought we were born with this from a mutated gene...is that correct?

12/15/2012 11:01 AM
Garburt
Posts: 288
Member

Good question. Last time I looked for the cause online, they thought it was hereditary but surveys proved that wrong and the only thing they could agree on was trauma, stress and obesity to be related to some of the subjects onset of DD.

12/16/2012 12:00 AM
cta7978b
cta7978bPosts: 338
Member



Post edited by: cta7978b, at: 12/16/2012 02:12 AM

12/16/2012 08:44 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Tala77Wolf..as far as I know..I don't think we have the final word on if it is genetic in every case. It may be one of these diseases lurking in our genes but not necessarily coming out unless certain other criteria are present..like hormonal abnormality or a reaction to abuse. This is just my take on it. Hugs, Grandma Sylvia
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