![[Living with Livedoid Vasculopathy #2] 24 Years of Necrosis, Recovery, and Saving My Legs](https://khealingtable.com/wp-content/uploads/2026/05/IMG_0532-1100x450.jpeg)
Have you ever experienced the sheer terror of watching unknown red spots on your skin turn into deep, painful ulcers? Today, I am sharing the second chapter of my 24-year journey battling Livedoid Vasculopathy (LV)—a rare, chronic autoimmune vascular disease.
From initial misdiagnoses and university hospitals to holistic Eastern medicine and intense chemotherapy, I have been through it all. If you or a loved one are currently fighting this lonely, painful battle, I hope my story brings a glimmer of hope.
1. Misdiagnosis, Agony, and the Real Verdict
When the mysterious crimson spots first appeared on my lower legs, my local dermatologist shook his head. Confessing he had no idea what it was, he casually prescribed generic steroid ointments and anti-inflammatory pills. They did absolutely nothing.
The rash aggressively climbed up past my knees. My legs became heavy and swollen, resembling tree trunks. Standing in front of the kitchen sink for even a few minutes became an agonizing chore.
After months of despair, I finally visited the dermatology department at Yonsei Severance Hospital, a renowned university hospital in Seoul. Following a skin biopsy, I was finally given a name for my nightmare: Livedoid Vasculopathy.
What is Livedoid Vasculopathy (LV)?
A rare, chronic vascular disease characterized by painful, purpuric (purple) reticular patches, severe ulcerations, and skin necrosis on the lower extremities, caused by microvascular thrombosis (blood clots).
The university hospital prescribed a heavy regimen of steroids and specialized medications. Every morning, I would wake up to see the spots slightly faded, only for them to flare up into a fierce, angry purple by sunset. I had to lock away the skirts I loved to wear; the emotional distress and depression were suffocating.
2. Temporary Relief via Eastern Medicine & Career Interruption
Desperate for a cure when Western medicine offered no permanent solution, I searched tirelessly for alternative treatments. I eventually found an Eastern medical clinic specializing in vascular allergies.
The practitioner gave me a strict dietary directive: completely cut out fried foods, spicy dishes, and flour (bread). Instead, I was to eat a clean, traditional Korean diet focused on fresh vegetables (like Bibimbap) and prioritize absolute rest.
After six months of taking tailored herbal medicine, a miracle happened. The purpura vanished. My legs felt incredibly light, and I naively assumed I was fully cured.
Eager to re-enter the workforce after a long career break, I took a part-time job that required me to sit at a desk with my legs down for over six hours a day. Every evening, my legs would return home swollen and engorged with blood. Blinded by the joy of working again, I ignored the warning signs and pushed through. It was the calm before a catastrophic storm.
3. The Nightmare of Skin Necrosis and Leech Therapy
In my mid-40s, during a warm April, the angry red spots returned with a vengeance. Concurrently, my body suffered a severe hormonal imbalance, and my menstrual cycle completely stopped. By June, as the summer heat peaked, my legs turned into a living hell. The purpura began to bruise heavily, rapidly progressing into severe skin necrosis.
One ulcer would rot, and the necrosis would instantly bleed into the neighboring patch, expanding the wounds. The skin literally dissolved, exposing the stark white dermal layers, raw red flesh, and a relentless stream of yellow serous fluid. I had over ten deep, necrotic holes—each 2 to 3 cm in diameter—scattered across both legs.
In the suffocating summer heat, the agony was unspeakable.
Driven by sheer survival instinct, I tried leech therapy (Hirudotherapy) at an allergy clinic. Leeches were placed directly onto the swollen, open wounds to drain the stagnant, oxygen-deprived blood. While it offered slight relief initially, the final session triggered a massive systemic reaction, covering my entire body in a severe, bumpy allergic rash that required heavy antihistamines to subside.
4. A Decade of War: Infection Control and Nutrition Deficit
For more than ten consecutive years, a vicious cycle locked me in place. Every spring and summer, my legs would open up, weeping fluid and rotting. Every winter, the wounds would finally crust over and close, leaving behind massive, discolored scars. My right ankle became so weak and structurally compromised that I would randomly lose balance and trip while walking.
Managing the open wounds during the summer was a meticulous war against infection. When my legs radiated intense heat, I would apply ice packs to cool the inflammation, sanitize the area, and seal it with Hydrocolloid dressings (commonly known as EzDerm in Korea) to maintain a sterile, moist environment.
By this time, I had been taking steroids for a decade under a rheumatologist’s care. One day, a sudden wave of primal fear hit me: “Am I going to lose my legs forever?”
Looking back, my body was profoundly depleted. Due to severe financial hardships, I was pushing my physical limits to protect my family—doing heavy household chores until midnight while starving myself, surviving on nothing but simple soybean paste stew (Doenjang-jjigae) for an entire year. By my early 50s, my weight plummeted, and I suffered from hyperhidrosis (drenching sweats), which led to severe social anxiety.
5. Chemotherapy (Endoxan) and the Turning Point
Following a later surgery for cancer, I completely overhauled my life and adopted a Korean-style oncology diet. I ate steamed, easily digestible vegetables and small, clean portions of boiled meat to consistently supply my body with protein. Slowly, the vascular inflammation began to quiet down.
In my late 50s, my family life finally stabilized, and I returned to economic activity, which brought immense psychological peace. I began taking daily walks in the forest and took up painting—focusing on serene landscapes and vibrant flowers. I drew a hard line at 8:00 PM: after that hour, I practiced the art of letting go and doing absolutely nothing.
However, a few years ago, an intense bout of interpersonal stress struck. Despite it being winter, the necrosis immediately flared up again.
I was admitted to a major university hospital’s rheumatology department. The doctors explained that my immune system was abnormally hyperactive, actively destroying my own tissue. To aggressively suppress it, I underwent 6 rounds of Endoxan (Cyclophosphamide) chemotherapy injections, followed by four years of heavy immunosuppressants (Imuthera) and steroids. The medications made me vomit constantly, leaving my body completely battered.
6. Epilogue: Forgiving, Loving, and True Healing
Not long ago, I faced another terrifying episode where all strength drained from my legs, leaving me temporarily unable to stand or walk. Yet, standing at the end of this 24-year tunnel, I have finally realized what the ultimate medicine is: the immunity of the mind.
Today, I am dedicated to fiercely loving and cherishing the most precious person in my life—myself. I have genuinely forgiven every circumstance and person that ever caused me pain. Every single day, I release my burdens and whisper into the quiet space of my heart:
“I am sorry. Thank you. I love you.”
Through rigorous dietary discipline, strict lifestyle boundaries, and above all, absolute mental peace, my body and my legs are doing something incredible. They are healing.
To anyone out there navigating the dark, agonizing maze of Livedoid Vasculopathy: please, do not lose heart. Do not give up. Your body is listening directly to the voice of your soul.