Angela's Dercum's Diagnosis Journey
Donation protected
“When you hear hoofbeats, think of horses not zebras”.
Discovering one lump in your body can be frightening. Discovering thousands is terrifying. My name is Angela; I’m 33 years old living on the Gulf Coast in South Alabama. I am surrounded by my supportive and loving family. I am a wife to a wonderful husband of 12 years and a mother to my beautiful 12 year old daughter and my amazing 16 year old son. I am also a business owner and a woman who is passionate about veganism (plant-based diet), nature and life. I am dealing with thousands of lumps throughout my body which up to this point I was at a loss as to what was happening to me. After years of tests and research, I believe my mystery diagnosis has finally been found. Please help me on my journey to an official diagnosis. My hopes are to get to Tucson, AZ to see a specialist who can confirm the Dercum’s disease diagnosis. When you hear hoofbeats, think horses not zebras”. Doctors are trained when they hear hoofbeats (signs and symptoms) to look for horses (common diseases) and not zebras (rare diseases). I believe I am a zebra. With your help, I can finally solve my medical mystery.
First off, starting a GoFundMe campaign is one of the hardest things for me. I'm not one to ask for help, but I am struggling with some pretty serious chronic health issues that can not be ignored any more. I owe it to my family to get help.
My Story: Over the years I’ve seen numerous doctors and have been diagnosed with a few conditions (fibromyalgia, inflammatory arthritis, unspecified connective tissue disease with the possibility of lupus, Ehlers Danlos syndrome, etc), but nothing seemed to fit what I’m going through right now. I didn’t always have thousands of lumps. I first began to notice clusters of lumps behind my knees and the back of my thighs in 2011, but wrote them off as benign enlarged lymph nodes and connected them to my unspecidifed connective tissue disease diagnosis. Little did I know it was something much sinister. It wasn’t until 2013 when I noticed more and more painful lumps throughout my entire body (sparing only my head, hands and feet). I literally have thousands (to date) of painful deep-seated lumps throughout my entire body ranging from a size of a grain of rice to a marble and some even larger. I have so many lumps that I now have nerve damage (neuropathy). I struggle with chronic daily pain. Some days I have difficulty getting out of bed because the pain is so bad. On my good days I have to remind myself not to over do things. Over doing things and over exercising causes my pain to intensify putting my body into an inflammatory flare-up. I’ve noticed stressful times in my life also create inflammatory flare-ups. During these flare-up phases new lumps form. The relentless pain and discovering multiple fast-growing painful lumps is when I knew something wasn’t right. I sought out doctors to help me figure out what was causing the lumps. My condition has worsen and I have been in so much pain that I have almost given up hope. That's until I learned about a disease called Dercum’s disease (aka Adiposis Dolorosa). I actually first heard of Dercum’s disease from watching an episode of Mystery Diagnosis- you can watch it here: https://youtu.be/_tfzk2-Gwyg . In December 2013 I finally had a biopsy done of a lump in my forearm that confirmed the lumps as a lipoma (benign fatty tumor). After my biopsy (coupled with my chronic daily debilitating pain) it became clear that Dercum’s disease could be the answer to what’s causing my lumps. My surgeon agrees that Dercum’s disease could be the culprit, but doesn’t know enough to properly diagnose. According to some reports, Dercum’s disease is considered the third rarest disease in the world, and ‘the second most painful’.
I know this picture looks absurd, but underneath each and every one of these circles is a painful lipoma. These lipomas can be felt just under my skin. And this is just my shins and forearms totally 384 lipomas. My largest lipomas are in my thighs. The lipomas can be felt everywhere except my head, hands and feet. I've estimated I have thousands of lipomas ranging in size of a grain of rice to a marble and some even larger.
I had a lipoma removed and biopsied which can be seen from my scar on my left forearm.
What is it like to have thousands of tumors under your skin?
Imagine having deep lumps under your skin ranging from a small pea to a large marble all over your body that burn and feel like deep painful bruises. That you have days when your body is so sore and in so much pain you feel as if you had been hit by a truck. Some days the lumps have sharp pain like you are being stabbed with a hot knife. Imagine what it’s like to have an intense itch that you discover a new small lump forming at the itch site. The lumps itch so bad that you scratch yourself raw causing a bruise. Now imagine that physical activity like strenuous exercise, standing for prolonged periods, repetitive body motions, stress and lack of sleep causes new lumps to form and your existing lumps to become more painful and bigger. You try hard at being active and exercise every day, but you noticed when you over exert yourself, you pay the price with more pain, new lumps and you set yourself back by a few days to up to a week. You have many days that you struggle getting out of bed because you’re in so much pain. The pain from the lumps is so intense that it breaks you down. The pain is so bad that sometimes you want to take a scalpel and cut the lumps out to end the pain. You often worry about the lumps because it’s nearly impossible to determine if the lump you are feeling is something more sinister like cancer. You have days when your legs and feet swell which causes even more pain. Your clothing fits differently from one day to the next due to the lymphatic fluid build-up in your tissue. Imagine you have so many lumps in your forearms that doing things like typing on a keyboard, food prep and even writing causes extreme sharp burning pain. You often drop stuff because the nerves in your arms are so badly damaged from all the lumps that are crowding and pressing on nerves. Now imagine if you will how terrifying it is to have so many lumps under your skin with new lumps forming all the time and the ones you already have are getting bigger. You cry yourself to sleep many nights because of the pain and you often wonder how much longer you have to live because this mysterious disease is spreading so fast. Some days are so bad that you secretly wish the disease would just take you in your sleep.
This is what it’s like for me living with thousand of tumors under my skin. I remain hopeful and will fight this disease to the very end.
Please Help! I'm not ready to give up hope. I will fight this battle until the very end! I need your help to officially confirm the diagnosis of Dercum’s disease. Dercum’s disease is so rare that only a handful of doctors in the world can diagnose and treat the disease with Dr. Karen L. Herbst in Tucson, AZ being the leading doctor in the field. Dr. Herbst is a world renowned leading doctor specialized in subcutaneous adipose tissue (SAT) disorders. I have finally found a doctor who can help me. It took me over a year to get an appointment with Dr. Herbst because of her waiting list. My family has recently endured some financial hardships that are making the trip to see Dr. Herbst a challenge. Your donation is GREATLY appreciated and will help fund my travel to Tucson, AZ to see Dr. Karen Herbst this June 2016. Donations will help with travel expense, medical expenses (Dr. Herbst is an out-of-state/out-of-network doctor) and any recommended treatments and therapies like additional surgeries, manual lymphatic massage therapy, compression garments, compression pump, etc suggested by Dr Herbst. Because Dercum’s disease is so rare, many of the recommended treatments and therapies are not covered by insurance and are expesive. Recommended treatments and therapies will help reduce pain, decrease lymphatic fluid build-up in tissue and over all improve my quality of life. Any donation you can make is GREATLY appreciated!
What is Dercum’s Disease? Dercum’s disease (aka Adiposis Dolorosa) was discovered by an American neurologist Francis Xavier Dercum in 1888. Dercum’s disease is an extremely rare disease that causes benign fatty tumors (lipomas) that grow in the subcutaneous adipose tissue (the fat tissue). Lipomas in Dercum’s disease can range from the size of a grain of rice to the size of a fist or larger. The lipomas cause pain and are found in multiples throughout the body. Pain is often severe as it presses on nearby nerves. Pain can last for hours and often comes and goes. Pain often times worsens with physical activity, strenuous exercise, emotional stress, repetitive motions, lack of sleep, poor diet, surgery, trauma and steroid use. Other symptoms include weight gain, fatigue, weakness, itching, brain fog, easily bruising, headaches and irritability. Dercum’s disease has been linked and/or comorbidities to conditions such as arthritis, fibromyalgia, Ehlers Danlos syndrome, mast cell disease, diabetes and hypothyroidism. Causes are unknown. Dercum’s disease is believed to be either an autoimmune disease (in which the body’s immune system mistakenly attacks healthy tissue) and/or it may be caused by genetics. Females are 20 times more affected than men with the onset age of 30-60 years old. Dercum’s disease is often undiagnosed or misdiagnosed as conditions such as fibromyalgia. There is no cure for Dercum’s disease. There are a few therapies and medications that work for some individuals. Pain management is a top priority. You can’t diet and exercise-away lipomas. The only way to get rid of lipomas is through surgical excision and even then they may grow back. Surgical excision and liposuction are used for problematic lipomas to relieve pain. Dercum’s disease is a progressive disease which means it will worsen as the disease advances. Lipomas may be benign, but as the disease advances and the lipomas grow and multiply, it can cause damage and
problems with nerve function, muscle function, joints, blood vessels, lymphatic function and even organ function. Lipomas in Dercum's disease can also grow inside organs and cause organ damage and in late stages organ failure. Dercum’s disease symptoms may eventually progress to the point of immobility. Dercum's disease is much more than a disease that causes hundreds and thousands of painful lipomas in the fat tissue. It's a connective tissue disease, it's a disease of the vascular system, It's a disease of the lymphatic system, it's a disease that causes nerve damage, etc, etc. I know there is a lot of disconnected when people hear the world "lipoma". Many people have a couple of non-painful lipomas on their body. Dercum's disease lipomas are NOT the same as regular lipomas. Many of these lipomas are angiolipoma which contains blood vessels. Lipomas in Dercum's disease are VERY painful. Some Dercum's disease lipomas are embedded and adhered to muscle and nerves. The lipomas that grow in a person who has Dercum's disease is very similar to metastasized cancer. The rate of growth is fast.
More info can be found at:
www.fatdisorders.org/fat-disorders/dercums-description
www.rarediseases.org/rare-disease/dercums-disease
http://www.lipomadoc.org/dercums-disease.html
What has this journey taught me so far? You know your body best. Some doctors don’t have all the answers. You have to be your own health advocate. When your body is telling you something is wrong, don’t give up on finding answers. Sometimes it just means you need to find the right doctor who can help you figure it out. I believe I have finally found that doctor…Dr. Karen L. Herbst.
A recent picture of my family. My son is 16 and my daughter is 12. Both of which are towering over me.
My Family! My Strength! My LOVE! <3 This is the reason I keep fighting.
Thank you so much for your support! Your help means so much to me and will greatly improve my quailty of life. I am so greatful for each and every one of you. We are all in this together fighting for diagnosis and a cure for rare diseases.
Please help if you can as rare diseases are difficult and expensive to treat. Please feel free to share my story. Perhaps I can help someone else who may have Dercum's disease. Thank you!!!
<3 Angela
Discovering one lump in your body can be frightening. Discovering thousands is terrifying. My name is Angela; I’m 33 years old living on the Gulf Coast in South Alabama. I am surrounded by my supportive and loving family. I am a wife to a wonderful husband of 12 years and a mother to my beautiful 12 year old daughter and my amazing 16 year old son. I am also a business owner and a woman who is passionate about veganism (plant-based diet), nature and life. I am dealing with thousands of lumps throughout my body which up to this point I was at a loss as to what was happening to me. After years of tests and research, I believe my mystery diagnosis has finally been found. Please help me on my journey to an official diagnosis. My hopes are to get to Tucson, AZ to see a specialist who can confirm the Dercum’s disease diagnosis. When you hear hoofbeats, think horses not zebras”. Doctors are trained when they hear hoofbeats (signs and symptoms) to look for horses (common diseases) and not zebras (rare diseases). I believe I am a zebra. With your help, I can finally solve my medical mystery.
First off, starting a GoFundMe campaign is one of the hardest things for me. I'm not one to ask for help, but I am struggling with some pretty serious chronic health issues that can not be ignored any more. I owe it to my family to get help.
My Story: Over the years I’ve seen numerous doctors and have been diagnosed with a few conditions (fibromyalgia, inflammatory arthritis, unspecified connective tissue disease with the possibility of lupus, Ehlers Danlos syndrome, etc), but nothing seemed to fit what I’m going through right now. I didn’t always have thousands of lumps. I first began to notice clusters of lumps behind my knees and the back of my thighs in 2011, but wrote them off as benign enlarged lymph nodes and connected them to my unspecidifed connective tissue disease diagnosis. Little did I know it was something much sinister. It wasn’t until 2013 when I noticed more and more painful lumps throughout my entire body (sparing only my head, hands and feet). I literally have thousands (to date) of painful deep-seated lumps throughout my entire body ranging from a size of a grain of rice to a marble and some even larger. I have so many lumps that I now have nerve damage (neuropathy). I struggle with chronic daily pain. Some days I have difficulty getting out of bed because the pain is so bad. On my good days I have to remind myself not to over do things. Over doing things and over exercising causes my pain to intensify putting my body into an inflammatory flare-up. I’ve noticed stressful times in my life also create inflammatory flare-ups. During these flare-up phases new lumps form. The relentless pain and discovering multiple fast-growing painful lumps is when I knew something wasn’t right. I sought out doctors to help me figure out what was causing the lumps. My condition has worsen and I have been in so much pain that I have almost given up hope. That's until I learned about a disease called Dercum’s disease (aka Adiposis Dolorosa). I actually first heard of Dercum’s disease from watching an episode of Mystery Diagnosis- you can watch it here: https://youtu.be/_tfzk2-Gwyg . In December 2013 I finally had a biopsy done of a lump in my forearm that confirmed the lumps as a lipoma (benign fatty tumor). After my biopsy (coupled with my chronic daily debilitating pain) it became clear that Dercum’s disease could be the answer to what’s causing my lumps. My surgeon agrees that Dercum’s disease could be the culprit, but doesn’t know enough to properly diagnose. According to some reports, Dercum’s disease is considered the third rarest disease in the world, and ‘the second most painful’.
I know this picture looks absurd, but underneath each and every one of these circles is a painful lipoma. These lipomas can be felt just under my skin. And this is just my shins and forearms totally 384 lipomas. My largest lipomas are in my thighs. The lipomas can be felt everywhere except my head, hands and feet. I've estimated I have thousands of lipomas ranging in size of a grain of rice to a marble and some even larger.
I had a lipoma removed and biopsied which can be seen from my scar on my left forearm.
What is it like to have thousands of tumors under your skin?
Imagine having deep lumps under your skin ranging from a small pea to a large marble all over your body that burn and feel like deep painful bruises. That you have days when your body is so sore and in so much pain you feel as if you had been hit by a truck. Some days the lumps have sharp pain like you are being stabbed with a hot knife. Imagine what it’s like to have an intense itch that you discover a new small lump forming at the itch site. The lumps itch so bad that you scratch yourself raw causing a bruise. Now imagine that physical activity like strenuous exercise, standing for prolonged periods, repetitive body motions, stress and lack of sleep causes new lumps to form and your existing lumps to become more painful and bigger. You try hard at being active and exercise every day, but you noticed when you over exert yourself, you pay the price with more pain, new lumps and you set yourself back by a few days to up to a week. You have many days that you struggle getting out of bed because you’re in so much pain. The pain from the lumps is so intense that it breaks you down. The pain is so bad that sometimes you want to take a scalpel and cut the lumps out to end the pain. You often worry about the lumps because it’s nearly impossible to determine if the lump you are feeling is something more sinister like cancer. You have days when your legs and feet swell which causes even more pain. Your clothing fits differently from one day to the next due to the lymphatic fluid build-up in your tissue. Imagine you have so many lumps in your forearms that doing things like typing on a keyboard, food prep and even writing causes extreme sharp burning pain. You often drop stuff because the nerves in your arms are so badly damaged from all the lumps that are crowding and pressing on nerves. Now imagine if you will how terrifying it is to have so many lumps under your skin with new lumps forming all the time and the ones you already have are getting bigger. You cry yourself to sleep many nights because of the pain and you often wonder how much longer you have to live because this mysterious disease is spreading so fast. Some days are so bad that you secretly wish the disease would just take you in your sleep.
This is what it’s like for me living with thousand of tumors under my skin. I remain hopeful and will fight this disease to the very end.
Please Help! I'm not ready to give up hope. I will fight this battle until the very end! I need your help to officially confirm the diagnosis of Dercum’s disease. Dercum’s disease is so rare that only a handful of doctors in the world can diagnose and treat the disease with Dr. Karen L. Herbst in Tucson, AZ being the leading doctor in the field. Dr. Herbst is a world renowned leading doctor specialized in subcutaneous adipose tissue (SAT) disorders. I have finally found a doctor who can help me. It took me over a year to get an appointment with Dr. Herbst because of her waiting list. My family has recently endured some financial hardships that are making the trip to see Dr. Herbst a challenge. Your donation is GREATLY appreciated and will help fund my travel to Tucson, AZ to see Dr. Karen Herbst this June 2016. Donations will help with travel expense, medical expenses (Dr. Herbst is an out-of-state/out-of-network doctor) and any recommended treatments and therapies like additional surgeries, manual lymphatic massage therapy, compression garments, compression pump, etc suggested by Dr Herbst. Because Dercum’s disease is so rare, many of the recommended treatments and therapies are not covered by insurance and are expesive. Recommended treatments and therapies will help reduce pain, decrease lymphatic fluid build-up in tissue and over all improve my quality of life. Any donation you can make is GREATLY appreciated!
What is Dercum’s Disease? Dercum’s disease (aka Adiposis Dolorosa) was discovered by an American neurologist Francis Xavier Dercum in 1888. Dercum’s disease is an extremely rare disease that causes benign fatty tumors (lipomas) that grow in the subcutaneous adipose tissue (the fat tissue). Lipomas in Dercum’s disease can range from the size of a grain of rice to the size of a fist or larger. The lipomas cause pain and are found in multiples throughout the body. Pain is often severe as it presses on nearby nerves. Pain can last for hours and often comes and goes. Pain often times worsens with physical activity, strenuous exercise, emotional stress, repetitive motions, lack of sleep, poor diet, surgery, trauma and steroid use. Other symptoms include weight gain, fatigue, weakness, itching, brain fog, easily bruising, headaches and irritability. Dercum’s disease has been linked and/or comorbidities to conditions such as arthritis, fibromyalgia, Ehlers Danlos syndrome, mast cell disease, diabetes and hypothyroidism. Causes are unknown. Dercum’s disease is believed to be either an autoimmune disease (in which the body’s immune system mistakenly attacks healthy tissue) and/or it may be caused by genetics. Females are 20 times more affected than men with the onset age of 30-60 years old. Dercum’s disease is often undiagnosed or misdiagnosed as conditions such as fibromyalgia. There is no cure for Dercum’s disease. There are a few therapies and medications that work for some individuals. Pain management is a top priority. You can’t diet and exercise-away lipomas. The only way to get rid of lipomas is through surgical excision and even then they may grow back. Surgical excision and liposuction are used for problematic lipomas to relieve pain. Dercum’s disease is a progressive disease which means it will worsen as the disease advances. Lipomas may be benign, but as the disease advances and the lipomas grow and multiply, it can cause damage and
problems with nerve function, muscle function, joints, blood vessels, lymphatic function and even organ function. Lipomas in Dercum's disease can also grow inside organs and cause organ damage and in late stages organ failure. Dercum’s disease symptoms may eventually progress to the point of immobility. Dercum's disease is much more than a disease that causes hundreds and thousands of painful lipomas in the fat tissue. It's a connective tissue disease, it's a disease of the vascular system, It's a disease of the lymphatic system, it's a disease that causes nerve damage, etc, etc. I know there is a lot of disconnected when people hear the world "lipoma". Many people have a couple of non-painful lipomas on their body. Dercum's disease lipomas are NOT the same as regular lipomas. Many of these lipomas are angiolipoma which contains blood vessels. Lipomas in Dercum's disease are VERY painful. Some Dercum's disease lipomas are embedded and adhered to muscle and nerves. The lipomas that grow in a person who has Dercum's disease is very similar to metastasized cancer. The rate of growth is fast.
More info can be found at:
www.fatdisorders.org/fat-disorders/dercums-description
www.rarediseases.org/rare-disease/dercums-disease
http://www.lipomadoc.org/dercums-disease.html
What has this journey taught me so far? You know your body best. Some doctors don’t have all the answers. You have to be your own health advocate. When your body is telling you something is wrong, don’t give up on finding answers. Sometimes it just means you need to find the right doctor who can help you figure it out. I believe I have finally found that doctor…Dr. Karen L. Herbst.
A recent picture of my family. My son is 16 and my daughter is 12. Both of which are towering over me.
My Family! My Strength! My LOVE! <3 This is the reason I keep fighting.
Thank you so much for your support! Your help means so much to me and will greatly improve my quailty of life. I am so greatful for each and every one of you. We are all in this together fighting for diagnosis and a cure for rare diseases.
Please help if you can as rare diseases are difficult and expensive to treat. Please feel free to share my story. Perhaps I can help someone else who may have Dercum's disease. Thank you!!!
<3 Angela
Organizer
Angela Roberts Glattli
Organizer
Fairhope, AL