Why I’m Not Angry Cancer Gets More Attention Than Scleroderma

 

 

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

 

FOOT NOTES

**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!

 

Scleroderma Is A Terrible Name

Scleroderma is an autoimmune disease.  Healthy cells are mistaken for unhealthy ones, and the body attacks itself.  Not only is scleroderma a difficult name to remember, it is also a Greek word that means: hard skin.  Because of the name, people mistake scleroderma for a skin condition.

When a doctor told a patient that he or she had scleroderma, it was usually followed by a statement like: Get you’re things in order, you don’t have long.  For a long time, that was true.  Now, thanks to research, there are treatments available to help patients survive the progression of scleroderma by treating a patient’s symptoms.  Scleroderma is different with every patient.  Some have Diffuse Scleroderma or the “fast and furious killer”, or Limited Scleroderma, which progresses slowly and in spurts.  Many patients die of complications of this type.  Then, there is the overlap kind.  In addition to scleroderma, a patient  can have  another autoimmune disease like Lupus, Fibromyalgia and any of the dozens of other autoimmune diseases that manifest slowly.  Often not receiving the proper diagnosis because symptoms have not yet appeared, or the patient’s medical team does not know enough about autoimmune diseases to diagnose properly.  Often resulting in the Limbo of illness: Mixed Connective Tissue Disease, or MCTD.

I was diagnosed in 1994, at the Madison Veteran’s Hospital.  The Veteran’s Healthcare System was originally  designed for aging men.  So not only did my medical team have limited research about scleroderma at the time, I was a woman and they really had to work hard to make changes to accommodate my treatment.  They did not know I should have immediately been placed in an occupational therapy program to prevent my hands from becoming severely damaged and impaired.   They did not know to inform me about symptoms and warning to watch for, so I didn’t have to loose part of my thumb.  They didn’t know that my additional symptoms were really sarcoidosis, and not scleroderma symptoms, proven by an outside provider after taking months of ER chest CT scans to UCLA’s pulmonology department, three hours away paid for out of my own pocket and private insurance I could only receive at the time because my husband and I owned a small business, and as an employee could not be turned down because of pre-existing conditions.  Yes, many people I met in the 1990’s are surprised to still see me alive.

Now that denying insurance coverage because of pre-existing conditions is now against the law, patients with scleroderma are receiving life-saving and life-extending treatment, but many patients in areas that are not near a major city like Los Angeles, Chicago and Minneapolis, patients are still getting misdiagnosed and dying because of it.  How do we solve this problem?  With medical provider education and patient education.  Of course, money is the biggest help because that funds research and treatment.  All of these things are happening, but we can do so much more.  Scleroderma needs better marketing.

T-shirts and teal bracelets are not enough.  A pretty color, a shirt  and accessories is not enough.  Scleroderma needs a new name and  I have the perfect name.  One that embodies the surprise of the uncommon scleroderma symptoms. A name that expresses the pure frustration of scleroderma patients, in addition to the terror they feel when they experience trouble doing something we all do without thinking; like swallowing and breathing.  I think you will agree this name, fits.

Scleroderma needs to be renamed, “Whisky-Tango-Foxtrot”.

It’s easier to say, easier to remember and let’s face it, you can’t forget it.  It’s obvious why, but I’ll explain it in one simple sentence. It’s easier to Tango or Foxtrot after some whiskey.  (By the way, did you know there are two ways to spell whisky?)   Not everyone likes whiskey, but who doesn’t like dancing, or watching someone dance?  See how easy that is?  Whiskey Tango Foxtrot.  Rolls right off the tongue.  So let’s not just raise awareness, let’s educate and get the word out about this debilitating, progressive  and degenerative disease called scleroderma and rename it Whiskey Tango Foxtrot.  Because I know when I first heard the word scleroderma the first thing I said was, “sclero-what?”.  End sclero-what today, because the best way I know how to express what scleroderma has made me think of the most is, “WTF?”

 

Scleroderma
What did you think of when you first heard scleroderma? This sums it up for me