What is RHD?

Rheumatic heart disease (RHD) is a serious, long-term condition caused by damage to heart valves after episodes of acute rheumatic fever. It affects over 55 million people globally and more than 500,000 Ugandans, or roughly 1 in 100 people, making it a major cause of cardiovascular illness and premature death in low- and middle-income countries.

RHD disproportionately affects children and young adults, particularly those living in resource-limited settings where access to healthcare, antibiotics, and proper sanitation is often inadequate. The disease starts with untreated or undertreated infections of Group A Streptococcus (GAS), such as strep throat. These infections can trigger an autoimmune reaction known as acute rheumatic fever, which in its most severe form, causes permanent damage to the heart valves — the condition known as RHD.

Symptoms of RHD may include shortness of breath, fatigue, chest pain, fever, and joint swelling. If left untreated, it can result in heart failure, stroke, infective endocarditis (heart damage), pregnancy complications, and even death. Fortunately, with medical care, RHD can be slowed down or stopped, and many people with RHD can live long and healthy lives.  RHD is preventable, especially through timely diagnosis and treatment of strep throat. If a child you know has a sore throat or difficulty swallowing, please have them visit a health clinic to see if it is strep throat and if so, to receive antibiotic medication (penicillin).

How do I get RHD?

  1. RHD begins with an infection by a germ, Group A Streptococcus bacteria, most commonly presenting as strep throat. If not properly treated with antibiotics, the body’s immune response can become overactive and mistakenly attack its own tissues, especially the heart, joints, skin, and brain — leading to acute rheumatic fever.

  2. Acute rheumatic fever often presents with fever, fatigue, sore throat, chest pain, difficulty breathing, and swollen joints. The heart may become inflamed — a condition known as carditis — particularly affecting the valves. Once damaged by inflammation, the heart valves may become scarred, hardened and dysfunctional. When this valve damage persists or worsens, it leads to chronic RHD, disrupting the normal flow of blood through the heart.

Can RHD be treated?

Yes, treatment depends on the stage of the disease:

3. During the early RHD period, medication can be administered to prevent the progression of the disease.  This treatment is called Secondary Antibiotic Prophylaxis (SAP) most commonly in the form of Penicillin G benzathine (BPG). BPG is an intramuscular penicillin injection given every 28 days to keep the disease from advancing.

4. Advanced-stage RHD may require diuretics, blood thinners, or heart failure medications, or require surgical intervention or a catheterization procedure to repair the damage to the heart valves.

Lifelong medical follow-up and strict adherence to treatment can greatly reduce complications and improve outcomes. Many people diagnosed with ARF and RHD can go on to lead long, productive and happy lives while following guidance from their medical team.

How is RHD Diagnosed?

RHD is usually diagnosed through a combination of a healthcare provider’s evaluation and reviewing pictures of the heart (imaging tests). Doctors and healthcare workers use several different methods to determine if a patient has RHD. These include:

  • Echocardiography (echo/ultrasound of the heart) is the best way for doctors and healthcare providers to see if there is damage to the heart valves

  • Medical history, including past episodes of sore throat or rheumatic fever. Please tell your medical provider if you’ve had these in the past.

  • Electrocardiogram (ECG) and chest X-rays may also help assess heart function.

  • Blood tests may be used to confirm recent strep infection or inflammation.

  • Screening programs using portable echocardiography have proven effective in early detection, especially in school-aged children in endemic areas.

I Have a Sore Throat. What Should I Do?

Not all sore throats are dangerous, but if it is persistent, painful, comes with fever, or you live in an area where RHD is common, seek medical attention such as:

  • Visit a health clinic rather than a traditional healer.

  • Your provider may request a throat swab test or rapid antigen test for strep if available.

  • If diagnosed with strep throat, take the full course of antibiotics as prescribed.

  • If symptoms worsen or do not improve within a few days, return to the clinic.

  • However, if it's an emergency (e.g., trouble breathing, chest pain), go to the nearest hospital immediately.

What Should I Do If I Am Diagnosed With RHD?

If you are diagnosed with RHD:

  • Begin or continue secondary antibiotic prophylaxis (SAP) immediately, as prescribed by your health provider. This involves receiving regular injections of Benzathine Penicillin G (BPG) every 28 days to prevent recurrent acute rheumatic fever and further heart valve damage.

  • Attend regular follow-up visits with a healthcare provider for monitoring and management.

  • Keep in touch with the RHD registry (e.g., through the Uganda Heart Institute) to ensure coordinated care and tracking.

  • Adopt a heart-healthy lifestyle, including nutritious food, physical activity (as advised), and avoiding infections.

  • If you are pregnant or planning pregnancy, discuss special care options with your provider, as RHD can increase risks during pregnancy and childbirth.

What Should I Do If I Am Diagnosed With RHD?

If you are diagnosed with RHD:

  • Begin or continue secondary antibiotic prophylaxis (SAP) immediately, as prescribed by your health provider. This involves receiving regular injections of Benzathine Penicillin G (BPG) every 28 days to prevent recurrent acute rheumatic fever and further heart valve damage.

  • Attend regular follow-up visits with a healthcare provider for monitoring and management.

  • Keep in touch with the RHD registry (e.g., through the Uganda Heart Institute) to ensure coordinated care and tracking.

  • Adopt a heart-healthy lifestyle, including nutritious food, physical activity (as advised), and avoiding infections.

  • If you are pregnant or planning pregnancy, discuss special care options with your provider, as RHD can increase risks during pregnancy and childbirth.

How Can I Help Someone With RHD?

Supporting someone with RHD can make a big difference in their health journey. Here are ways to help:

  • Understand that RHD is not contagious — only strep throat is. If someone you know has strep throat, avoid sharing food and utensils and practice good handwashing.

  • Be supportive: let them rest when needed, help with transport to appointments, and remind them of their injection dates.

  • Encourage them to take their medications regularly.

  • Include them in community life. Isolation can worsen their emotional well-being.

  • Contact the RHD Registry or health worker to find out if peer support groups or community health volunteers are available to assist.

  • Educate others in the community about strep throat prevention and RHD awareness.

Living With RHD

Living with RHD doesn’t mean giving up on a vibrant, fulfilling life. With early detection and proper medical care, individuals can effectively manage their condition and continue to enjoy active, joyful lives.

  • Stay on schedule with BPG injections every 4 weeks.

  • Maintain a heart-healthy lifestyle, including good nutrition and moderate physical activity as advised.

  • Avoid exposure to untreated infections.

  • Attend all medical visits and keep an open line of communication with your healthcare provider.

  • Continue school, work, and personal goals — many people with RHD go on to lead productive and inspiring lives.