- CASE FILE
Hundreds of rare excruciatingly painful tumors, body-wide. Additionally, a rare connective tissue disorder. All with various comorbidities.
ABOUT THIS CASE FILE
At this point in my journey, I am diagnosed with Dercum's Disease, Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Disorder (MCAS) and Cushing's Syndrome. All considered rare conditions, and even rarer in men. Issues as follows:
* Adipose/Lymphatic Disorder: Hundreds of debilitating & painful Tumors (Lipomas & Angiolipomas) growing and pressing on nerves/organs throughout my entire body. Insidiously, surgically removing (1) will cause several more to grow in its place. Exercise and stress causes faster growth of these tumors.
* Connective Tissue disorder (defective collagen production) causing systemic issues. Including significant hypermobility: causing random painful dislocations & subluxations of various body parts such as shoulders, fingers, ankles, knees, spine, hips and ribs. Unknown effect on organs.
* Chronic Pain (in addition to subluxations/dislocations and excruciatingly painful tumors): Early onset body-wide Osteoarthritis, Bursitis, Tendonitis, Muscle Weakness, Cramps, Hip Pain & overall Stiffness.
* Significant back pain: Scoliosis, Spinal Stenosis, Bulging Discs & Coccyx pain
* Adrenal Disease (rare tumor)
* Overactive Mast Cell response
* Cyclical Hernias
* Digestive issues: Diverticulosis, Abdominal Distention, Nausea and Hypoglycemia
* Recurring Chronic Cystitis & Pyelonephritis
* Positive Antinuclear antibody (devoid of Lupus)
* Positive genetic marker/carrier for Gilbert’s Syndrome
* Immune to most major pain medications & antibiotics
* Lymphedema & Inflammation
* Excessive growth of cherry angiomas (several hundred)
* Metabolically resistant to weight loss; or fluctuating over years
* Right bundle branch block, Postural Orthostatic Tachycardia Syndrome & Dysautonomia
* Extreme life-altering Fatigue
* Severe Obstructive Sleep Apnea and Insomnia (CPAP compliant)
* Major Depression & Anxiety (caused by conditions)
* Brain fog affecting executive functions (caused by conditions)
- A myriad of other comorbid conditions…..
There are NO CURES for Dercum's Disease or Ehlers-Danlos Syndrome. I've been seen by top specialists in various clinics. Tried many medications, modalities, nutritional avenues, etc..
When your main conditions fall under "other" category, you can only imagine how doctors have limited to no knowledge. Along with bringing more awareness to "invisible illnesses" there has to be more done to help break-through proper treatments and cures. The issue is 'what' is causing so many ailments to compile atop of each other? Am I done or is there more coming? For example, can we expedite the finding of genetic markers for these conditions so others don't have to suffer?
I have recently lost everything due to this: my profession of 24.5 years, my home, my personal relationships, etc.. Chronic illness is not only debilitating but very isolating.
Thanks for reading,