DERCUM’S EXPERTS

Dercum’s Disease is considered one of the rarest diseases in the world. As if that isn’t a large enough uphill battle alone, it is also relatively unknown in the wider medical community. To our knowledge, Dercum’s Disease is only mentioned at two medical schools on earth.

Naturally that combination means there are very few doctors with wide expertise in the disease, or the research background worthy of being referred to as an “expert”. In fact, there are only two doctors in the entire world who have published multiple multi-year clinical research studies of Dercum’s Disease. They’ve seen a total of well over 10,000 Dercum’s patients. Yet much like proper clinical researchers, they don’t seek funds from individuals, they don’t look for praise or press, they don’t charge outrageous fees to see patients, and even they don’t refer to themselves as “experts”. Those two doctors are both located in Sweden.

But take heart. The principles of sound medicine are the same whether you are treating a cold, cancer, or Dercum’s Disease. It’s important to not be surprised if the doctors you work with are unfamiliar with Dercum’s Disease. But please, do not be dismayed and do not doubt their talent, skill, or ability to care for you.

It’s certainly understandable that patients would seek out an expert – a word they associate with, as Merriam Webster puts it, “having, involving, or displaying special skill or knowledge”. However, the very use of the word “expert” should be a glaring red flag if it’s being used by a doctor.

In the medical profession, reputable doctors simply don’t refer to themselves as experts. Rather, they use the term “specialist”. Why? Because medical science is ever growing, ever improving. No one doctor can ever know all there is to know, even about just one single disease. Hence reputable doctors refer to themselves as specialists because they specialize in one specific aspect of medical knowledge. “Expert” gives the impression of all-knowingness, something no true scientist would ever wish to convey. Alternatively, “specialist” conveys a constant search for knowledge. That’s a very important difference. “Expert” is a word of self-promotion and self-aggrandizement. “Specialist” is the word used within the medical profession to signify uniquely directed research.

True science-respecting specialists in very rare diseases or conditions are highly sought after and well regarded within the medical community. Specialists are often recruited by very large teaching hospitals and research institutions, where their unusual specialities are included in their published list of credentials. By way of example, Johns Hopkins University recruited a respected Orthopedist with a highly detailed specialty of treating patients with the rarest forms of skeletal dysplasia affecting people under four feet tall. His highly specialized and constant search for scientific information has resulted in him obtaining a sought after position as an associate professor at one of the world’s leading research hospitals. True specialists will be found at institutions like Johns Hopkins, where scientific research and teaching are at the forefront.

If someone is claiming to be an “expert”, that alone is concerning. If they’re an expert at some small hospital, or an obscure clinic of their own invention with grand sounding names, that should make it all the more apparent that they’re more interested in promoting themselves than actually making a contribution to medical science. Naturally specialists early in their career won’t start out at Johns Hopkins. But if they are that early in their career, they shouldn’t be calling themselves an expert.

• Doctors that request donations be given in their own personal name, rather than through a respected institution. By way of example, an actual doctor within the Dercum’s community requested that a wealthy individual include them by name in their will. Not a hospital, not a research institution, but the doctor’s own personal name, so that when that person died a large percentage of their estate would become that doctor’s own personal property. This doctor just expected the individual to trust that the funds would eventually be used for research. This is highly unethical and far outside the realm of standard procedure.
• If they promise quick, dramatic, or fast results. There are no short cuts in good medicine.
• Charging high fees for consultations.
• Not accepting or cooperating with medical insurance.
• Seemingly seeking celebrity over science.
• Trying to offer medical advice in unusual online settings either for free or for a fee (which, incidentally, can be both dangerous and potentially illegal).
• Offering concrete medical advice to large groups of people, either online or in person. For instance, we’ve heard of certain “experts” telling members of online forums to take large doses of a specific over the counter medication, with explicit orders not to tell their individual doctors. This is incredibly dangerous, unethical, and not to mention, illegal. Behavior such as this could lead to medical license revocation.
• If they adopt a “persecution complex”, as if they alone have all the answers and everyone – from your own doctor to the medical industry or “big pharma” – are somehow “out to get them”.
• Encouraging you in any way to either not talk to your own personal doctor, not inform your doctor of their advice, or do something contrary to your doctor’s advice.
• Attempting to fast forward through the vital clinical diagnostic process for Dercum’s Disease of carefully ruling out other possible causes. No one can magically “feel your fat” and know for certain you have Dercum’s, rather than other potential causes, like Madelung’s Syndrome, a thyroid issue, or any number of potential endocrine diseases or disorders.
• If the doctor in question has a financial interest in their recommendations, but fail to disclose that fact. For instance, if a doctor recommends an experimental treatment from a company that they happen to own part of. Incidentally, failure to disclose such financial interests is a violation of law. That exact circumstance has happened in the Dercum’s community.
• Except in certain specific circumstances, any time a doctor tries to sell you something should give you pause. (Exceptions to this would include specialists that routinely sell medical equipment, e.g. podiatrists selling special orthotic shoes, orthopedists selling custom molded orthotics or boot casts, etc.)
• Either explicitly or implicitly discouraging dissent, excluding those who disagree, or encouraging followers to trust in them and them alone. Medical science is not a religion and should not be expected to be believed based on faith.
• If you can’t find any words of caution, be wary. If they specifically fail to mention any data or outcomes that may disagree with or challenge their conclusions, or if you are actively discouraged from considering other data or points of view, that’s a very concerning red flag.
• If they try to equate patient surveys or individual case studies with actual long term, double blinded clinical research. That difference should be acknowledged and there should be a healthy respect for the difference between anecdotal evidence and actual research.
• Is the organization’s name accurate and does it reflect a professional approach to medicine, science, and ethics? Compare to organizations like the American Cancer Society or the Leukemia & Lymphoma Society. Is the disease name that’s mentioned in the organization’s name accurate? This may sound silly or obvious, but many organizations are out there that don’t have a great enough understanding of science at their core to even accurately name themselves. That should give you great cause for concern. If even the name isn’t accurate, how could any research they produce be accurate as well? How could such inaccuracies possibly lead medical professionals to take the organization – or even the Dercum’s community at large – seriously?
• Pressuring you to ask your doctor to order specific blood tests, rather than ordering the tests themselves. This is considered highly unethical, as doctors are professionally responsible for the tests that they order. If they order a given test, they must have some idea of what they will do if that test comes back abnormal. If a test does come back abnormal and they fail to act, that is a form of medical malpractice. For that and many other similar reasons, it is not ethical for one doctor to get another to order tests for them, either directly or indirectly via coercion of the patient.

If something doesn’t feel right, if there are large leaps in logic, if anything sounds too good to be true, please, listen to your instincts. Trust your gut. You simply must be your own advocate, you must protect your own health. Living with Dercum’s Disease is hard enough already. Falling victim to a quack is an added risk you simply don’t need. Trusting anyone with your life is a big deal! Please don’t take it lightly. Do your research, be careful, be cautious, and be sure that whenever you put your trust in someone, you’ve done your due diligence. Your life literally depends on it.