I live in Texas, the Dallas Fort Worth metroplex. I have had Dercums disease symptoms since the age of 13. I have been diagnosed with Dercums disease. To date I have had over 275 tumors removed.
I am a patient of Parkland Hospital in Dallas. I am undergoing psychiatric care, surgical care and seeing the pain clinic. I am having a very hard struggle to get the medications I need. I am more often than not given NSAIDs that do nothing for my pain. Hydrocodone, 10/325 helps the pain in my feet and hands while Diazepam is used to relieve anxiety, muscle spasms, and the depression I go through. I also take high doses of Gabapentin for the Neuropathy that has set in.
I have been suicidal for many years now. Most doctors do not listen, so I now take information to them from studies that have been done. Most of them still will not read what I present. I had to embarrass my plastic surgeon to take action using liposuction, after I had presented him with just three sheets of large print about Dercums disease, and all most important information highlighted, he told me that he would never find liposuction as a option to treat Dercums disease. I had to tell him that he just read it. He asked "where" I stated i the information I just provided you. The paper also provided all the Doctors names and information on how to contact them. On my next visit to schedule surgery he stated that he had spoken to a Doctor in Sweden who agreed with me.
I am now considered 100% disabled. I am very mad at most Doctors because they are not hearing this information in medical school. They stare at me with a blank face. Then they write a prescription with no knowledge of the disease. I tell them I can not take NSAIDs because they have no effect on me.
How can I reach out to the medical Doctors to inform them of this disease?
How are you? As mentioned in your message, diagnosis of Dercum Disease may be difficult to arrive at since this condition is not commonly seen. While many doctors/ specialists are encouraged to conduct extensive research and studies in the medical community, funding is extremely limited for orphan diseases. I do not consider myself as an expert but rather also a student on this field. There is still much to learn about its management and diagnosis. Some patients with this condition coped with making blogs while some doctors in medical societies have continuing medical education regarding these rare diseases. The internet is a very powerful tool in reaching out to many people including doctors. Try to hang on and stay positive. Find the doctor that would understand you and not just give you useless medications. You can contact the doctors who specialize on this field, check with the other patients with this condition and take control of your health as you are doing now. Have an open communication with your doctor and discuss anything that worries you. Take care and best regards.
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