One woman's journey from neglected symptoms to a life-changing rare disease diagnosis

In our 30s, we're often in the prime of our careers and lives. But for Miss Wong, this decade brought a life-altering diagnosis of a rare disease called Pulmonary Arterial Hypertension (PAH) . What started as an easily ignored cough during winter evolved into a struggle to walk even a short slope in an MTR station. Her story is a powerful reminder to never dismiss the signals your body sends.

The Slow Onset: From Winter Cough to Breathlessness

Looking back, Miss Wong believes the turning point might have begun after a COVID infection several years ago. For about three or four years, she developed a cough every winter. Attributing it simply to getting older and having a weaker constitution, she didn't pay it much attention. The situation worsened dramatically after she contracted Influenza A in mid-2023. "From then on, the shortness of breath was no longer limited to winter. It plagued me year-round," she recalls.

In early 2025, news of a Taiwanese celebrity's sudden death from influenza spurred her to seek medical help. Initially, doctors found a shadow on her lung and diagnosed her with asthma, prescribing steroid inhalers. "I felt my breathing improve slightly and thought I was fine," she says. She let her guard down and even stopped going for follow-up appointments .

But the disease's advance was far more relentless than she imagined. Miss Wong gradually noticed severe problems with her mobility. "Even walking on a slight slope inside an MTR station would leave me gasping for air," she explains. A woman who once did weight-bearing exercises now found everyday walking a luxury .

The Diagnosis: "Why Me?"

The real turning point came during an overseas trip. After taking a bath, Miss Wong noticed her feet beginning to swell, a condition that worsened daily. Upon returning to Hong Kong, she measured her own blood oxygen saturation and was horrified to find it had dropped to a dangerous level in the 80s. "I immediately went to Queen Mary Hospital and heard the unfamiliar name for the first time: 'Pulmonary Arterial Hypertension,'" she shares .

The moment of diagnosis was devastating. Her family was distraught, and she was consumed by overwhelming fear and uncertainty. "Online information about PAH was a mix of truth and fiction. Some said the survival rate was extremely low, others that a lung transplant was the only option." The question, "Why me?" , echoed endlessly in her mind .

A Glimmer of Hope: Injections and Renewed Mobility

Initially, Miss Wong's life revolved around frequent hospital visits and medication. She had appointments every two weeks and took four types of oral medication daily. While her condition improved slightly, her doctor was candid: these drugs could only slow the disease's progression.

In her despair, her specialist offered a ray of hope: a new injectable drug that could potentially relax blood vessels and even "cure" PAH. Fortunately, as a civil servant, Miss Wong qualified for drug subsidies. She received her first injection in September 2025 and underwent a cardiac catheter ablation two months later.

"Now, I self-inject into my abdomen every three weeks." The treatment has brought remarkable changes. Her blood oxygen levels have risen from the 80s to 94%—not yet normal, but the dizziness has disappeared. More encouragingly, her mobility has drastically improved. In the "six-minute walk test," she went from being assessed as able to walk only a dozen meters to exceeding 100 meters .

The Crushing Burden: HK$100,000 Monthly Medical Bills

While her physical condition has stabilized, the impact of PAH remains profound. At an age when she should be advancing her career, Miss Wong faces subtle criticism from superiors and colleagues for frequent sick leave. "To keep my condition stable, I don't dare take on too much work. The fear of being disconnected from society is something outsiders may find hard to understand," she confides .

Even heavier than the career pressure is the anxiety over medical costs. Her oral medications alone cost HK$20,000 to HK$30,000 per month. The injectable drug she now relies on adds another HK$60,000 monthly . "Nearly HK$100,000 in medical expenses every month is an astronomical figure for an ordinary family," she states. Grateful for her civil servant status that provides subsidy, she can't help but ask, "What about other patients? Are they supposed to give up their right to live because of their financial situation?"

A Plea for Faster Drug Approval and Subsidies

Having walked through the valley of the shadow of death, Miss Wong hopes her experience can convey a clear message to the public and the government. "Since a potentially curative drug for PAH is already available, I hope the government can expedite the local registration process and include it in the subsidy scheme to help all PAH patients," she pleads earnestly .

She also wants to remind everyone in Hong Kong: "Never underestimate any warning sign your body gives you, especially persistent breathlessness and coughing. Seeking medical advice early and getting the right treatment can truly change your life."

The Broader Context: "Medicine Exists, But Affording It Doesn't"

Terry Lai Ka-wai, Acting Chairman of the Hong Kong Alliance for Rare Diseases, highlights the stark reality for PAH patients: "Medicine exists, but affording it doesn't." Oral medications cost HK$20,000-$30,000 monthly, while innovative injectable drugs are around HK$60,000. Combination therapy can push monthly expenses close to six figures , far beyond what average families can bear .

While some individual cases receive support through various channels, most patients are not so fortunate. With innovative drugs that can significantly improve PAH outcomes now available, there is a pressing need for authorities to actively research whether including them in subsidy programs is viable, ensuring more rare disease patients can access timely, appropriate treatment .