Of course I wish scleroderma got the awareness and funds cancer “enjoys”. I’m not angry and I’m going to tell you why. I am also going to offer suggestions to help you educate health care providers and the general public by recognition and comparison.
Why is cancer so infuriating to patients with rare diseases? Well, obviously, people have heard of cancer. It occurs more in the general population. I have seen many statuses and comments sharing frustration and anger about how many other diseases get more publicity and funding than #scleroderma research. Since 1994, I too have been frustrated about how everyone pays more attention to cancer. In 1999, I thought that I would rather have #cancer, because at least most doctors know what cancer is, and how to treat it. My frustration eventually turned into action.
I decided to learn more about cancer to see if there were similarities I could compare to scleroderma and share using both cancer and scleroderma as search words. What I found and concluded, surprised me.
I made some interesting discoveries. Cancer research and patient care, have provided caregiver models, and education programs. Some cancer drugs are used in lower doses to slow down the disease process in autoimmune diseases by immuno-suppression, like methotrexate.
Cancer research has also brought us the infusion clinic. Because I have infusions of a powerful immune suppressant drug every eight weeks to accompany my dose of methotrexate, as a non-cancer patient, I still benefited from cancer research and patient care. More people get cancer, and many have difficulty when IV’s are needed. Not only did I get the best nurses for difficult IV’s, I also received education from these nurses about how I could benefit from a power-port.
Okay, what were we taking about?
Cancer research has helped lead the way in the care of chronically ill patients. Yes, scleroderma and other patients with other illnesses, have benefited from treatment and care of cancer patients. But wait, cancer isn’t the only condition that helped improve patient care. How about the care of individuals who are paralyzed by stroke or injury? There’s some rehab crossover. How about Diabetes? Yep, the care of diabetes patients has benefited many a scleroderma patient when it comes to Raynaud’s in feet. It makes it easier to get insurance to cover orthodontic inserts, because the diabetes is familiar and when a podiatrist says, “We see this in the feet of diabetics, and treat it the same.” Of course there are many differences, but by pointing out similarities in a rare illness to one that’s familiar, it makes it easier for the person you are teaching to learn and recall. General practitioners know that poor circulation causes infections and amputations of limbs. If you are the scleroderma patient and a doctor recognizes a symptom from an illness they know, about that is the scleroderma patient’s opportunity to compare scleroderma (or insert illness here) the similarities to scleroderma. That will help that doctor recall scleroderma from the Rolodex# in their brain.
Here is one way I use recognition:
My quick answer for decades to the question, “What is Scleroderma?”
My short answer, ” Scleroderma is an autoimmune disease in the same family as Lupus & Rheumatoid Arthritis, except it affects connective tissue. You know how there are different types of cancer, there are different types of autoimmune diseases.”
I know, it’s not all that short, but it’s as short as I can get. Recognition of Lupus or RA helps. If someone hasn’t heard of those, I add a blurb about diabetes. I will say something like this:
“You’ve heard about diabetes, right? Diabetes is also considered an autoimmune disease. “
Most people are surprised by that information. They recognize diabetes, and now you’ve connected scleroderma to diabetes. Just like throat cancer is different
In other words, those who named cancer did well for marketing purposes. No matter what kind of cancer one has, everyone knows about cancer.
So when you see all the pinking going on and awareness campaigns of cancer , or more well known causes year-round, do some research. Find similarities between the progress in patient care and how they have benefited scleroderma patients, in small ways or tremendously. When you do something like that, it also gives you a way to join the conversation about a more well-know disease and even help other causes by sharing their fundraising information.
Now you’re probably thinking, “Did Karen just say I should share information about more popular causes than my own?” Yeah, I am and here’s why: Research breakthroughs and progress in other illnesses, benefits research in other areas. One example is Benalysta for Lupus. Benlysta was approved by the FDA for the treatment of Lupus. Oh wait, it was THE first medication FDA approved for treating Lupus. As I write this, there is research being done to find out if Benlysta can be used to effectively treat scleroderma. (See what I did there)
Another idea is a compare and contrast. Remember my post about how a woman I spoke with at Social Security who thought scleroderma was a skin condition? Well, find a skin condition, learn about it and understand the similarities and difference, so that you can have a better reply to the “skin condition” thing.
Anger from cancer getting more attention is definitely warranted, but based on my experience, acting in anger is not the best idea. I think as a community of scleroderma patients, if we can take the conversation outside the scleroderma community by relating experiences in common with patients of other illness, we can get the word out faster. A rising tide lifts all boats. Research progress helps the illness community over all. We can go back and forth for days about how one is worse than the other, but all illnesses suck. Awareness is useless if we don’t teach anything along with it. And teaching does not include photographs for shock value, but that’s a whole other post.
Thanks for reading! -K
**At the time, I lived in Murrieta California and Loma Linda was my Veterans Healthcare center.
** When pain or anxiety hit me, I am not shy about asking for them, in spite of the stigma of “depending one them”. Pain medication lowers my anxiety, because it takes away or dulls it to make it tolerable. High anxiety makes my pain worse as well. I have often been relived of joint pain and swelling pain, with anxiety medication, because I have a diagnosis of major depression and anxiety. Many patients can attest to stress making symptoms worse. I ask for these things with the risk of stigma in the back of my mind.
*** Before I stopped my doctor, I assessed his surroundings and mannerisms, to determine he was not rushing to a crisis. Also, if he was on his way to a crisis, he would not have stopped to speak with me. When I am in pain, or during a crisis situation, I have an unusually clear head. It came from two decades of experience. It may sound rediculous that someone in so much pain, has such a cool head, but please keep in mind I have 20 years of advocating for myself. I have driven hours for care while in excruciating pain. And when I say I have driven hours, I mean I was driving the vehicle. I have learned calming techniques to be able to speak on my behalf. I will admit though, the longer the problem continues, the more the F bombs fly.
#If you don’t know what a Rolodex is, Google it you young whippersnapper. And get off my lawn!