How To Live With a Disease Nobody Wants to Recognize

March 7, 2017

By Cynthia Prentice

My name is Cynthia and since the age of eight, I have suffered with pain which was not diagnosed until I was 55.

At first the pain was a vague sense of hurting and throbbing but not after a shock, just a pain. When telling a parent, then a doctor, it was difficult to explain, but this pain came and went and for a year and nobody really believed me. Then my local doctor thought it better that I be seen in a hospital for children.

After some summary investigations, which at the time, were very little, I was referred to a child psychiatrist who every month for six months, told me I was not in pain and that it was all in my imagination. It was a hard lesson to learn at eight that nobody believed you were in pain, but it taught me well because nobody did really believe me for fifty odd years. By then I was covered in painful, excrutiatingly painful lumps (biopsied as lipomas and angiolipomas) which were inducing a physical handicap by infiltrating into muscles and reducing the strength of the muscles everywhere.

Still no doctor could tell me what it was. I started doing my own research in medical libraries just before the coming of home computing and afterwards on the net. I thought I might be suffering from this disease called Dercum’s Disease which was discovered in 1889 by Dr. Dercum, the American president’s own physician. I was right and went to the United States in 2006 to be diagnosed and participate in a study.

Today, we still have no research which can effectively help us. There has been no research as to the aetiology of this disease. The numbers are supposedly low, but on social media, we’ve discovered that our numbers are quite large. I feel the patients are lost in the onset of the huge wave of obesity in the world. Today, I am largely handicapped.

The pain is difficult to control and to live with but I am not alone as there are thousands of us across the groups on the net. So this disease might not be as rare as one thinks, it remains largely undiagnosed and unrecognised because it is not taught in medical schools at all. This is a major problem because it is well known and acknowledged that the skin and the fat are essentials organs to the human body and that fat or adipose tissue is, in fact, a hormone producing organ. So why do doctors not understand that it is an organ which can be diseased like other organs?

We do not over eat, we are not obese by choice, we are ill and the weight we are carrying is diseased fat. There are several adipose tissue disorders but unfortunately, doctors see fat and not diseased adipose tissue and it is difficult to even find help for the pain or removal of the most painful lipomas or angiolipomas.

I try not to complain and I do understand the importance of researching other diseases which might have far more patients than we do, but surely we could have access to some help in researching the cause of this disease, which might, in turn, lead us to efficient treatment if not a cure?

But for the moment and across most of Europe, where I live and have been able to make inquiries, there appear to be no specialists willing to take patients with this disease. I for one, do not have one single doctor, of any speciality, who is willing to take me on as a patient to follow my care and treatment. As with most other patients, I have other co-morbidities which mean I have to see doctors of different specialities, but we still have the same problem in finding ONE doctor who is willing to take us on in the United Kingdom.

Is this disease genetic? Will we pass this on to our families? What can we do to help research? I have already offered to do any tests anybody wants to do. Researchers can cut me up now and do whatever tests they like if it can go towards helping all patients with this disease, considered to be the third most painful known to man. Please help us find help!

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