11 Year Old Aims to Spread Awareness about Primary Pulmonary Hypertension, a Rare Disease That has Ravaged Her Family

According to a story from the Borehamwood & Elstree Times, the family of 11 year old girl Sivan Hermon is plagued by a rare disease: primary pulmonary hypertension. As the disease has claimed the lives of both her aunt and grandmother, who both died at age 38, it is clear in this case that the disease is the result of a genetic mutation. Her father’s sister is also starting to show early symptoms. Sivan chose to do the best thing that she could considering the situation: take action.

About Primary Pulmonary Hypertension

Primary pulmonary hypertension is a condition in which the blood pressure in the arteries of the lungs is abnormally high. The cause of the disease is often unknown in many cases. However, there are a variety of potential causes, such as certain heritable genetic mutations, exposure to certain toxins, and drug use (ex. methamphetamine). It can also appear as a symptom or complication in a number of other diseases, such as heart disease, connective tissue disease, and infection with HIV. The arteries in the lungs are often inflamed. Symptoms of this condition include rapid heartbeat, poor exercise tolerance, heart damage, shortness of breath, fainting, leg swelling, fatigue, and chest pain. Treatment may include a number of medications and surgical operations, including lung transplant. A transplant can cure the condition, but it can cause many complications. Survival rate is often only about two or three years without treatment, but the latest drugs can prolong life by several years or more. Click here to learn more about primary pulmonary hypertension.

Sivan Takes Action

Her aunt Ifat, who died most recently, was able to get a lung transplant, but ultimately succumbed to a severe infection. Regardless, Sivan looked to her aunt’s example to know what to do next. Ifat was a passionate advocate for the Israel Pulmonary Hypertension Association and helped them with fundraising. Sivan undertook a similar project recently when she swam the equivalent of a marathon race in a span of four weeks to spread awareness about primary pulmonary hypertension. She plans to continue swimming until her Bar mitzvah on November 2nd.

If you would like to support Sivan’s cause, click here.


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