• Jenna

• PhD from the University of Hong Kong

• Heterozygous familial hypercholesterolemia patients

• Red Rice Grain FH Patient Organization Founder

• Red Rice Grain Emergency Rescue Initiator

• AHA First Aid Training Instructor

During my 2015 physical exam, I discovered my LDL cholesterol level was 6.3 mmol/L, significantly higher than others. I searched online...After receiving the information, I went to see a doctor, who mentioned that it might be hereditary and that I needed to take medication long-term.

I initially found it hard to accept. After a month of taking the medication, I went for a follow-up checkup, and my LDL cholesterol level had dropped to around 3 mmol/L. I then reduced the dosage on my own. When I went for another checkup, my LDL cholesterol level had spiked again. This cycle repeated itself for over a year before I finally realized that I needed to take lipid-lowering medication at the correct dosage long-term.

In 2015, I didn't have any genetic testing done; I was just taking cholesterol-lowering medication. In early 2019, I had a whole-exome sequencing test done and was diagnosed with heterozygous familial hypercholesterolemia.

Familial hypercholesterolemia (FH) is an autosomal inherited disease caused by a mutation in one of the key genes involved in the breakdown and metabolism of low-density lipoprotein cholesterol (LDL-C). Its main clinical features are significantly elevated LDL-C levels, xanthelasma on tendons and skin, and early-onset atherosclerotic cardiovascular disease (ASCVD).

Based on the type of gene mutation, FH is divided into heterozygous FH (HeFH) and homozygous FH (HoFH).The incidence of HeFH is 1/300-1/250, while the incidence of HoFH is 1/360,000-1/250,000, both of which are rare diseases.The estimated population size of FH in China is 2.76 million to 6.91 million, but the diagnosis rate is only 1%, meaning that the vast majority of FH patients remain undetected.

During the few days I went to Beijing for genetic testing, I coincidentally joined my current patient support group. In the group, I was like every other new member.Similarly, I expressed my anxiety and guilt, and sought counseling and help. During those days, many helpful fellow patients in the group answered many of my questions.The problem helped me through the most helpless period.

From that moment on, I felt the power of mutual help.

The real idea came to me in April 2019 when I signed up for a spring training session at the Rare Disease Development Center. At that training session, I...I learned that patient support groups exist, and that these groups can do many meaningful things, such as: disease education and...Public awareness campaigns, patient services, policy advocacy, and even participation in drug development, promoting disease treatment and scientific research progress. Therefore,From that time on, I had the idea of establishing a Chinese FH (French Hicks) support group. Moreover, in many countries internationally, FH...There are already well-established patient organizations and foundations.

I hope to promote FH in China so that more people can get early diagnosis and early intervention; I hope to provide more comprehensive patient services, such as establishing a platform specifically for patient communication, timely updates on the latest research progress on the disease, and regularly organizing patient meetings; I hope to provide a series of products and services that are friendly to the FH population, such as developing an FH daily management system to manage and store our blood test results long-term, and promoting the application of emergency equipment in China...

In April 2020, my family and I founded the Red Rice Grain Familial Hypercholesterolemia Patients' Organization, a non-profit patient support organization.Used forPractice and experimentation are what I referred to above as "hope".

Our initial vision was to enable people with febrile hepatitis (FH) to achieve the same high quality of life and well-being as the general population. Our mission was to improve early diagnosis and intervention for FH in China. As our organization has progressed, we have become clearer about our goals and have reconsidered and refined our vision and mission.

Our current vision is that FH will no longer be a threat to life.Mission: To promote early diagnosis and early intervention, and to help FH patients stay away from cardiovascular disease.

The reason it's named "Red Rice Grain" is because Xuezhikang is one of the earliest intervention medications for many children with fatty liver disease (FH), and it's made from red yeast rice. We don't call it a medicine; we just call it "red yeast rice."

Therefore, Hongmili hopes to bring the initial care and warmth to the FH population, just like red yeast rice.

Yes, you are welcome to follow my social media account. I will share the latest updates on myself and my organization from time to time, including information on attending conferences and learning, organizing activities, and FH treatment.

We hope that through our efforts, more people will understand FH and that we can promote early diagnosis, early intervention, and effective treatment for the FH population in China.

Our goal is to find 10,000 fellow patients within 5 years. We also hope that all FH patients will join us and become participants in the fight against FH, speaking out for FH!