Rays Dercum's Disease Journey

Hi my name is Ray and I am nearing the end of my ability to cope with an Disease state probably Dercum's Disease.  I am just like you, I worked and lived just like you. I helped raise a son who is now 15 and he has taught me so much about courage and determination. I have hundreds of painful lumps all over my body. I get sick easily due to my immune system being compromised. I am constantly in pain. Stress and physical extertion cause me to have intensified pain and aggressive growth of the lumps on my body. I lost my health insurance when I lost my ability to work. 

About seven years ago I began having serious health problems again. I began to notice pain and an increase in the lumps on my body. I would literally cry from the pain. It was like someone was stabbing me all over my body. Each of the hundreds of lumps I have began to hurt and the rate of new lumps increased dramatically. Everyday there were new ones and I began to have my first bouts with Irritable Bowl Syndrome. 

I began to miss more and more work and found that I could no longer physically or mentally handle stress. I have been put through a litany of tests and sadly a laundry list of surgeries all in an attempt to treat me. all with limited to no results at which time I began to notice that medical providers started to give me that look that means this is all in your head and we do not believe you.

Meanwhile I have lost everything, my ability to work, my home, my wife, my self worth, my dignity, my friends, everything. Could you imagine ? It seems like one day you are fine and the next everything has changed. I have always worked in fields that allowed me to help others and I am proud to say that I helped a lot of families all over the gulf coast.  

I do not yet have a diagnosis although I strongly believe I have Dercum's Disease. 


The disease that I have is extremely rare and even more rare in males. I am in constant pain and I am faced with an Orphan Disease state that most doctors have no idea of and are not even open to learning about it. I cannot get the pain treated and I end up having to go to the ER when I just can't stand the pain anymore. 



Could you Imagine someone sticking a lemon between you skin and the bone or bunches of marbles in clusters between your ribs and your skin. The pain is terrible, I get muscle cramps so severe that it might take me a couple of days to finally get rid of the feeling. I get inflamation in my Rib cage and my Esophagus has horrible spasms. My joints swell and seem to take turns as to which will hurt me from day to day. This past couple of months the pain is in my left hip is excruciating, you just cant get away from it. VERY PAINFUL! I look like a freak at least that is how I feel. The glans on my body get swollen and painful. I call it dueling glands because you never know from day to day which one is going to swell and hurt. Pain does weird things to you and causes me stress which causes me more inflamation which causes me more pain. I would never do it, but there have been times whenI have thought about killing myself, just to get away from the pain. 
I had this same procedure done they removed two lumps from my abdomen and it was abnormally painful during the deadening and during the surgery and crazy during recovery. Within a day I had new lumps coming in and after a month I had five more to replace the two they took out. Sounds strange but I swear when they cut out those two all of the lumps got fired up. Some Dercum's patients have hundreds removed. I already have scars all over, but I could not imagine having this painful procedure done hundreds of times.

There is one thought leader in this field and I will use your help to be seen by Dr. Karen Herbst and hopefully to participate in treatment and research. There is currently no Cure for Dercum's disease. There is however hope and I am determined to figure out a way to get some part of my life back. I recently started back to college at UWF to try and retrain myself for a field of work that might better suit my disability. I sadly have had to withdraw this semester because I have become sicker. Getting out of bed is truly a chore but I have tried to continue doing the things that bring me joy, like cooking,and music and caring for my son. My son has autism and I feel so quilty about being sick. It is so very hard to think that I have added to his load. My son is one of the most caring and loving persons I know. I try to keep my health from impacting his time with me and he has been understanding when I need to stay in bed or I am in pain. This is my son Ray :) 



I never thought in a million years that I would need to ask for your help, but I am desperate. Last year I was hospitalized with fluid in my lungs the doctors thought it was pneumonia, I went for almost 6 months with a violent cough that would cause me to gasp for air. I am 51 and no one expects to get sick it just happens and as you have probably seen and maybe even experienced in your own life resources run out incredibly fast. Because I have no health insurance, I cannot get a private doctor to even treat without paying in cash, which I do not have because I cannot work because I am sick. Terrible spiral! 

I was just like you
and with your help I can at least stop the progressive nature of Dercum's Disease.