Before you judge me, let me try to
explain why I deign to make such a statement and then maybe you can forgive me,
understand why I write this or at the very least throw a little bit of sympathy
my way. I am a 44 year old woman who suffers from a rare, very progressive and
very painful illness called Dercum’s disease. For those of you who know what
that is you either have been listening to me and I do thank you with all my
heart or you are one of the few that agonize along side of me and, therefore,
you hold a special place in my heart.
Now for those of you who have no
clue what Dercum’s is, I will try to explain it the best I can. Please do not
hesitate to reach out to me if you have any other questions or think you may
have Dercum’s disease. I am including my email information and some resources
at the end of this piece. I promise I will do everything I can to steer you in
the right direction and I honestly wish I could do a lot more.
Dercum’s disease (DD), known
medically as adiposis dolorosa (which literally translates to painful fat) was
first recognized by Dr. Francis Xavier Dercum in 1888. Though Dercum’s disease
is its most recognizable name it is really a syndrome (a collection of symptoms
that indicate a disease) and sadly, it being one of the rarer of the orphan
diseases, there are not many medical professionals that even know it by any name let alone how to diagnose or treat it.
Dercum’s is known to effect the
vascular and lymphatic systems. There are many symptoms that can present but the
main indication of Dercum’s is painful growths in the subcutaneous fat. These fatty
growths are called lipomas and can happen all through out the body and because
they are so insidious having them surgically removed is not always recommended
and possibly can make the lipomas or symptoms worse. Once the fat tissue is formed into a lipoma,
exercise or diet will not get rid of it. That fat is there to stay until it is
surgically removed. The progressive onset of Dercum’s usually starts sometime in
the mid-thirties but a lot of patients have claimed they noticed symptoms as
far back as adolescence.
Besides lipomas, the symptoms
people have can vary from patient to patient but most commonly include rapid weight
gain or loss, chronic pain, chronic fatigue, anxiety, depression, muscle spasms,
cognitive issues, headaches, swelling and sleeping disorders. To put some
perspective on the disease, look at the symptoms of fibromyalgia, MS, Lupus and
other autoimmune diseases and add painful fat on top of the mix and you
basically got Dercum’s. Also because it is a syndrome, many other health issues
can show up like diabetes, hypertension, thyroid disease, asthma or other
chronic lung disease, IBS, migraines, endometriosis and kidney disease, just to
name a few.
OK, so with that explained now I
will get into the reasons why I would rather have cancer instead of Dercum’s:
Cancer Has Recognition Power
I was at the pharmacy getting my prescriptions
and was asked, "Do you want to donate to Stand
Up to Cancer?"
First thought, yes. Second thought, those bastards get all the money. Third thought, Janet you are going to Hell for thinking that. My response, “Yes, I will definitely give $3 to Stand Up to Cancer. What do I look like some sort of unfeeling monster?” Maybe I didn’t really say those words but that is what I said in my head as I hit the button on the credit card swiper for a donation of $3.
First thought, yes. Second thought, those bastards get all the money. Third thought, Janet you are going to Hell for thinking that. My response, “Yes, I will definitely give $3 to Stand Up to Cancer. What do I look like some sort of unfeeling monster?” Maybe I didn’t really say those words but that is what I said in my head as I hit the button on the credit card swiper for a donation of $3.
Then there was a great campaign over the
last year for a disease that was not cancer related. The Ice Bucket Challenge was
a wonderful feat of awareness and fundraising for ALS. I marvel at the
simple brilliance of using social media in the way they did and I am so happy that
it was so successful. Now let me tell you all a secret. All of us
suffering from other really rare and lessor known diseases had a thought or two
go through our heads through the entire summer of watching video after video of
friends, family and famous people drench themselves in ice cold water, “Where
is our awareness? Where are our funds for research coming from? What about us?”
When you have a rare disease there
is no money coming in from the pharmaceuticals or grants from the governments
for research. You don’t get rock bands throwing concerts for you or celebrities
writing checks for thousands of dollars. If you are lucky enough to have a doctor or
team doing research all the funds are raised by the people with the disease and
their friends and family. The same people are hit up time and time again to
give money and sometimes it just seems like a losing battle.
So, yeah, give that $3 to help
cancer but consider giving the same amount to some other lessor known fundraiser.
It could be for a sole person doing a GoFundMe online trying to get to see the
one doctor in the entire country doing research on the disease they suffer from
or one of the many walks, golf tournaments, 5Ks, bike rides, dinners, pancake
breakfasts, poker runs, craft shows, dances, etc. running weekly in your area. We
do appreciate and rely on every dollar we can get.
That brings me to my second reason
which is covered a little bit under this one but deserved its own section as well.
Rare Diseases are Not Sexy Enough for Research
You got that right. I said sexy and
not that there is anything sexy about cancer but there are plenty of draws for pharmaceutical
companies and the government to put money into research for diseases that touch
people’s lives every day. If you do not know anyone personally with cancer
there are plenty of celebrities who have fought or are fighting their battle now.
There is always a new face for cancer that a disease like Dercum’s may never
have.
However, because I brought up sexy,
the one thing DD and certain cancer patients can agree on, there is nothing
sexy about painful lumps!
Doctors Hate Treating Us
It’s not that they hate us though
at times we feel they must. What they hate is trying to treat someone they
cannot actual treat. Their hands are tied. Most facilities they work out of or
insurance companies will not allow them to do experimental treatments on
patients and since Dercum’s is a rare disease almost everything suggested to
treat it is considered experimental.
Before your panties get into a
bunch, I am not saying that all treatments for cancer are easily obtained by
the patients and families. However, because it is cancer there is a better
chance that the insurance company can be overturned. At least the first part of
the appeal process is done just in the fact that they know what cancer is.
There are a lot of similarities between
Dercum’s and other diseases. One disease it has a lot in common with is lymphatic
cancer, but without having the malignant cells most doctors cannot justify to
an insurance company that we would benefit from radiation. In all reality, we don’t
even know if we would benefit anyhow because there is just not enough of us to
do trials on.
I’m Tired of Talking and Not Being Heard
OK, I’ll admit, I love to talk. I
love to write. I love to explain. In fact I have been told that I am a chronic
over-explainer but some days I am just too tired of explaining just what is
going on with me. One day I may be up and fine and another day I am out for the
count.
For some reason I feel that if
someone tells you they have cancer there is just that understanding and no
explanation is needed. Since I love to
explain so much, let me try to make this clear: If someone has a sickness that
is going to be with them until the day they die, whether it is that sickness
that is the cause of their death or something else, it remains a burden every
day. Some days are better than others but it is still there insinuating itself
in our bodies and waiting to strike again. Oh and usually it strikes with a vengeance
if we mere sickly mortals think we have overcome it even for one single sunny
afternoon.
We, my fellow sufferers and I, all
know this and need you to understand that fact. We will crash but we refuse to
be out for the count. Let us have our day in the sun and help us get through
the next few as best you can. We are still people and do enjoy things once in a
while.
There is No End in Sight
Now I will get a little
morose. Sorry, it has to happen and in no way do I want a pity party. If I see
a bunch of pitying comments I will feel I did not get my point across, so
please try to refrain.
I am writing these things for you,
the reader, so that you will understand. They may make you upset but this is reality.
I cried as I wrote this. I cried as I read this out loud and I am crying as I
am editing this. The point though is not to make you cry because crying clouds
your eyes. The point is to make you see with your eyes open. So if I ask one
thing, I ask you to reread the following if at first there are clouds in your
eyes. Then keep rereading until you understand what I am saying. Thank you.
I suffer from a painful,
progressive disorder that will not get better and I’ll have for the rest of my
life. I have had to accept the fact that I will always have to account for this
horrible thing in everything I do from now until I take my last breath which
could be 40 years from now.
At 44, I am still relatively young
but there are days I cannot get out of bed. I feel useless and unreliable. With
the progression of this illness I have slowly lost so many things in my life I
am in a constant cycle of grieving for something and yet I smile. I tell you I
am fine. I put on a mask and I try to make you feel more comfortable around me.
I hate scaring people with the truth. I hate thinking of the truth. I hate that
my body is rebelling against me which is pretty ironic because I loved to rebel
when I was younger.
I wish I had cancer because I don’t
get the relief of coming to grips that I only have months to live because I
have many, many years ahead of me of being in pain and it getting worse. I don’t
get to ever say I beat this because there are no treatments or cures approved
for me to take that will make that so. I don’t get the recognition and sympathy
with just saying one word when people ask what is wrong. Instead I need to
explain myself at every turn.
I don’t wish I had cancer because I
want to die or in any way I think it is a cake walk compared to what I have. I
just wish I had something that you all would understand and hopefully you are a
step closer to doing so.
– Janet L. Mullen
If you want to reach me, email me at jlouisemullen@gmail.com
Besides this blog, Living With Dercum's Disease, Janet also writes content for Cure Dercum's and co-administrates on-line support groups including Dercum's Research and SPASMS - Support for Pain, Agony, Sickness and Mental Suffering both which can be found on Facebook.
To donate money towards research for Dercum’s:
Rhode Island Dercum’s Research Fund, Inc. (US 501c3 charity)
All proceeds donated go to Dr. Karen Herbst's research for Dercum's and other adipose tissue disorders. Dr. Herbst a board certified Endocrinologist for more info on her and her research, please visit www.lipomadoc.org
