Complication ~ A story of Dercums

My almost 24yr old daughter (and mother of Priscilla the most amazing granddaughter EVER!) was recently involved in a car accident and upon her sBarubsequent medical care Scheuerrmans spine was inadvertently discovered.

<a href= "http://www.spine-health.com/conditions/spinal-deformities/scheuermanns-disease-thoracic-and-lumbar-spine"> Scheuerrmans Spine </a>

Not surprising since MVAs are the most prevalent way inwhich spinal deformities come to be diagnosed.  And interestingly enough, as history repeats itself, similar to my own experience.

Back in 1985, when I was graduating from high school on the way to the ceremonies I was involved in an incident where i was ejeted from the car. 

Family Ties ~ A story of Dercums

So now that you know a little about how I came about this affliction its appropriate for me to mention the part where I am 46yrs. (inside 76) mother & grandmother, myself.

And while Dercums seems to be more prevalent among females vs. males,  of my 3 children (a daughter & 2 sons) my middle child Joshua was affected prior to his birth.  Born with a Mesenchymal Hamartoma... he spent the first few months of his life at Shands (renowned teaching hospital in Gainesville FL).  Where the majority of his Liver was removed.  Long story short, I am happy to report, he is soon to be 23yrs. of age without any current medical difficulties.


The surgeons and specialists all said not to blame myself.. while they tried to save his life indicating that it was an unexplained phenomenon.  That although its not understood why ... occasionally during development cells become confused and grow in a disorganized manner creating a tumor.

In this case I think I now can accept full blame as there is a close relationship between the lumps in my body and and the type of lump that developed in my son's liver.  Even though I didn't have the first clue that I carried this affliction (much less pass it on) until many many years later... in fact, not until a few years after my youngest was born ('97),  post-hysterectomy ('00),  and lipoma removal ('01) did my GP and I discover Adiposis Dolorosa and how all the pieces of my puzzle fit.


Now it seems that I can explain some of the previously unexplainable... its a relief to me even if no one else gets it.
This zebra isn't crazy!

 (*see prior blog entry for zebra reference.

Important note here: the following is where I believe the identifiers of Dercum's Disease describe emotional disturbance.)

I can't stop thinking about my poor grandmother's suffering and what may be in store for the lower branches of my family-tree.  It particularly haunts me what my daughter might endure especially since she resembles me so very much... not necessarily beginning or ending with our schuerrman's spine(s).



Stay Tuned for next instalment..

going the distance ~ A story of Dercums

I suppose I thought my grandmothers ailments were all simply part of the process of aging and various unrelated conditions .  However, now, because of my own diagnosis (approx 13 yrs ago with Dercum's) combined with the knowledge I've gathered since...  & in light of the familial link... I am convinced by the similarities of our health, when I talk with Meemaw about her medical history and symptoms ... that she must have it too!

That's part of strangeness of  Dercum's; it encompasses a vast array of conditions.  Nasty things, besides the painful lipomas (the ones that aren't supposed to hurt), displaying symptoms like IBS, Fibromyalgia, deep arthritic & nerve pain.  Inflammation discomforts with flare ups that make your bones ache and your fat hurts you all over.  Weakness and sleep disturbances are common so it seems. But, wait there's more.... the hits just keep coming ...I won't bore you with the rest of the details right now except to say that no matter what the complication might be ~ it causes pain disproportionate  (in comparison to others with similar difficulties in absence of this rare condition).

So with all that being said imagine you're a doctor whose patient comes to you on a regular basis with some new mysterious complaint seemingly unrelated to other symptoms or condition.   You may think this person is a hypochondriac , or a drug seeker because it couldn't possibly be as bad as they are describing nor as diverse as they are trying to explain.

Armed with all that medical knowledge when you hear those hooves approaching do you look for a horse or a zebra?  More than likely you address the issue conservatively and make a referral.

Where does that leave .. the zebra?
Feeling like maybe they're a little crazy ..

a walk in my Grandmother's makeup ~ A story of Dercums

I say "A" Dercum's Story because this one is simply mine.  The stories are many and most will probably go untold or possibly even discovered. They are vast & varied yet, like deja-vu, have a sense of familiarity.. hard to describe and even more difficult to understand unless you can walk in the suffering shoes.

Dercum's

My story begins with Meemaw, my maternal grandmother,  the most gracious, kind hearted, God loving, southern belle that has ever blessed this earth, undisputed!

She would be proud to tell you herself that today she is 87 + years of age.  She has done and seen more in the last 15 years of her life than most will ever get to experience, ever.  (Can you tell she makes me proud!?)

I could mearly hope to dream of becoming even half the woman of strength, character, determination and compassion.... I just wish that the part of her genetic make-up, where I most closely resemble her, Didn't Exist!!

I watched through my lifetime her subtle aches and pains that grew sometimes into bed rest others to full-on medical crisis, all the while she would try to hide her discomfort and just kept going til she simply couldn't anymore.  Always plagued by arthritis, joint problems, swelling & inflammation, a lifetime of thyroid pills, angina / heart / bp issues...I could go on (and I will) but, now I walk that same mile so I have a different appreciation for how much she really has given and continues to give of herself.

An interesting fact to note at this point is that she has never received a diagnosis (other than from me, and I'm certainly no doctor) of Dercum's Disease (aka: Adiposis Dolorosa, adipose tissue disorder, Fatty Tissue Rheumatism, et al) yet has received diagnosis of nearly every other complication or symptom,  associated with this rare condition!!

To be ccontinued...