DONATIONS

It is incredibly admirable that so many Dercum’s patients – even those with very little – are so eager to do whatever they can to ensure more research is done and more people are helped. We are in a uniquely generous community, which is to be applauded.

First and foremost, we want to be clear that the Dercum Society does not solicit or accept donations. We are funded entirely by our founder. We also do not conduct research. We simply do our best to help make medical information more widely available and understandable.

We’ll do our best in this section to help break down principles of donation, encourage collaboration among the community, and how to help make the most out of your generosity.

• National Institutes of Health
• University of Malmö
• University of Lund

Learn more about the scientific guidelines that govern the world of medical research.

It seems clear that the largest, most immediate problem facing those affected by Dercum’s Disease isn’t actually a lack of research. Rather, it’s a lack of awareness. It’s impossible to accurately diagnose a disease if you don’t even know it exists. That’s precisely the situation many doctors and patients find themselves in with Dercum’s Disease – they just don’t know it’s a possibility. It’s incredibly easy and costs literally nothing to help solve this problem. In fact, you can do something right this very minute that will make a huge difference.

Talk! Open your mouth. Type. Email. Tweet. Facebook. Instagram. Talk to your family and friends. Talk to your doctors, talk to your nurses, talk to your medical providers. Be an open book. Talk to everyone who will listen! Share your story. Share medical journal articles. Be as knowledgable as possible about the details, science, and research. Share all of it.

Each person you can educate about Dercum’s Disease increases the odds that someone who is out there suffering right now might finally find precious answers. Right now you can help make that happen. It won’t cost a dime, but the results are absolutely priceless.

• 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.