Rare Disease Advocate
Medical System Researcher
❤Dog ❤ Food ❤sleep
Hi! Nice to meet you
This is Jessie. ☆*:.｡. o(≧▽≦)o .｡.:*☆
Hope You have a nice day!
About Me
• ↖(^ω^)↗
• My Mission
Me and My dog named Juan (it means prepare for the worst while living in the peace cause my dad doesn't like dog HHH
To build an accessible healthcare system where compassion and fairness are structural, so all patients, regardless of their condition, can receive affordable and high-quality healthcare
This shows Details of the inclusive insurance plans ( last plan in Figure 2):
including specific information about the insurance,such as
eligibility requirements, coverage amount, and reimbursement policies.
This is the homepage of RareCare website,
containing a search bar and an introduction
RareCare
Platform
This is the results after searching for “melanoma”: by entering a specific rare disease in the search bar, users can find all inclusive insurance plans that provide reimbursement for that condition.
This is the admin panel of RareCare
This is a space to welcome visitors to the site. Grab their attention with copy that clearly states what the site is about, and add an engaging image or video.
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Interview with JianZe
“A person's life should be lived in such a way that, when he looks back, he does not regret wasted years nor feel ashamed of an idle life,”wrote Pavel Korchagin.
“In the water, I feel much freer than on land,” Jianzhe says.
In 2020, at the age of twenty-two, he earned his Handicapped Scuba Association (HSA) certification — becoming the first person with a disability in China to do so.
Jianzhe was born with Emery–Dreifuss muscular dystrophy (EDMD), a rare genetic disorder caused by a mutation in the LMNA gene. Symptoms typically appear around age ten, leading to muscle weakness in the arms and legs, spinal stiffness, and potentially severe heart and respiratory complications.
Globally, only about 20,000 people are known to live with EDMD — making it one of the world’s rarest inherited conditions.
Though the disease has weakened his arms and neck and placed him in a wheelchair, Jianzhe never stopped dreaming. When he discovered the HSA program dedicated to adaptive diving, he decided to dive — literally — into a new chapter of life.
For most divers, pinching one’s nose or tilting the head is routine. For Jianzhe, both are nearly impossible. Yet he refused to let that stop him. Unable to pinch his nose, he learned to equalize pressure by swallowing air — a technique usually reserved for professional instructors.
When standard air valves required lifting his arm, he searched until he found a Japanese design that allowed air to vent downward.
Three months of persistence paid off. On August 30, he earned his certification. Underwater, he discovered a freedom unlike any other — a world where gravity fades, and his body moves as lightly as his dreams.
“Diving is something that blossoms slowly,” Jianzhe reflects. In the ocean’s quiet embrace, he found not just freedom, but purpose — proof that courage, creativity, and persistence can turn the impossible into possibility.
In the end, Jianzhe’s story is not one defined by disease, but by determination.
It is a story of motion — of sinking and rising, of struggle and grace — of a man who found his truest self between the waves.
🍗 Jessie's special Coca-Cola Chicken Wings
🧂 Ingredients
Main:
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🐔 Chicken mid-wings — 8–10 pieces (about 500g)
Seasonings:
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🥤 1 can Coca-Cola (500ml, Pepsi recommended)
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🌑 1 tbsp dark soy sauce (5ml)
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🍶 2 tbsp cooking wine (15ml)
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🍯 1 tbsp honey (optional, for extra gloss & sweetness)
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🧂 A pinch of salt (adjust to taste)
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🛢️ Cooking oil as needed
