Morbihan Syndrome treatment for Chase
Donation protected
(Short version, I have an extremely rare skin disease that severely hinders my quality of everyday life and my whole face is full of fluid) with no standard treatment existing. Ive been stuck this way for 4 years
If anyone takes the time to read this, My name is Chase Smith. I woke up one morning midway through my senior year in 2020 with a slight swelling under my left eye, It was nothing serious and barely noticeable so I chalked it up to not getting enough sleep. A few days passed and it was seemingly gone, and it stayed that way for about a month. Little did I know it would wax and wane throughout the rest of the year until it got worse inevitably reaching a permanent state of edema that would effect my life in the worst ways imaginable and fill my life with negativity.
By the end of the year It was both eyes, and my entire face became puffy and rounded. My eyelids swelling up into my peripheral vision and my brow drooping down over my upper eyelid, cheeks engulfing my nose and mouth.. My previously cleared acne coming back in full force due to the inflamation and scars stretching across my face. Constant pressure, terrible sinus trouble and eyes that seem to never stop watering..
It took ALOT of different doctors, Trial and error and false diagnosis (clogged tear duct, sinustitus, cellulitis) Etc, to make headway... Finding my diagnosis was a major accomplishment because I've been on my own and working since the day I turned 18 and never had the time for appointments as needed because the bills dont stop.
After a series of allergy tests officially ruling out allergies, Lots of blood work and panels for auto immune disease things came full circle to dermatology, after awhile case studies were found around the world of individuals matching my condition and symptoms against all other possibilities. It was ruled to be "MORBIHAN" Syndrome.. a rare disease first being noted in France in the 1950s. there is NO standard treatment or cure, Only results from case studies to pick and choose from until something works. The "Standard" among the studies is Isotretinoin known as ACCUTANE.
Expensive, Potent in high doses and strictly regulated due to the commonly adverse side effects being kidney/liver damage, cholesterol skyrocketing and extreme mental health changes. I was on Accutane from September 2022 to July 2023 with little effectiveness, after reaching the highest dose possible... Mentally adverse affects set on and I lived some of the darkest times of my life, I spent every day questioning my existence and why I had to suffer something no one else would have or understand.. Depression set on and I became angry, not in ways I couldnt cope with before but something entirely different.. EXTREME mood swings, hours lapsing in reality trying to make sense of my emotions only to lock myself up, contemplate the worst and eventually calm down to realize a whole day had passed.
after discontinuing accutane, and moving to Doxycycline antibiotics to manage acne inflamation and make it "bareable" things werent quite working out with my previous dermatologist, she wasnt doing any research and each appointment was a 9 minute reiteration of the appointment before with a $45 copay.
Im tired of living this way and am pursuing treatment in FULL FORCE, I recently began treatment under the care of Ohio State University Dermatology. I traveled to Columbus for a series of testing and a prognosis, The tests have reached my charts and I'll be figuring out what has been prescribed soon... at some point I will be recontinuing treatment with Accutane but paired with some promising anti-inflammatorys. Medication is costly, especially accutane and the drive alone is 3.5 hours.. I work hard for everything I have and do my best, I've stayed consistently employed and door dash for extra income when extra hours aren't available.
My condition has been the worst thing to ever happen to me, I hope and pray every day that I will eventually recognize myself in the mirror again and be able to smile.. Truly smile without close eyes and a tight face. My smile.
It has cost me jobs, It has caused me trouble in social settings. It has cost me opportunities. Ive made good money working in hazardous environments, where My own well being and that of others were at risk... To do so safely is not possible when I lose 80% of peripheral vision at any given time and my passions are work that involve hazardous environments regardless of where I go.. On 2 different occasions I've been a Mill worker, I'm currently beginning a career in corrections and Have always wanted to enter the corrections, Military or Law enforcement fields; However, Im constantly clouded with doubt due to my condition.
It's been tough living. My former family doctor said "Is it worth your time and risk? Its only cosmetic".
I want to spread awareness for my condition, Those suffering severe acne and Cystic acne as well as raise funds to ensure that I can have all of my medication and topical treatments as well as potential cosmetic surgeries if recommended. Funds will also be allocated to travel costs where needed, Oil changes, Tires, Gas. My car has to go vroom reliably for me to get to Columbus and back. I live in Ceredo, WV for reference.
Linked below are studies about Morbihan Syndrome/Disease for anyone interested.
Organizer
Chase Smith
Organizer
Fort Gay, WV