Living with Sickle Cell Disease: Patient Advocacy, Pain, and the Need to Be Heard

In this MedTalk, Kathrin Kunze speaks with Miriam Santos Freire about living with sickle cell disease, patient advocacy, clinical trials, and the importance of truly listening to patients.

Through her personal journey with HbSS sickle cell disease, Miriam shares what it means to live with an invisible condition, navigate healthcare systems, and turn lived experience into advocacy and change.

Miriam is a translator, linguist, language quality specialist, and patient advocate based in Cambridge, UK. She was born in Angola, lived in Portugal, and has been involved in patient advocacy for more than 10 years.

In this conversation, Miriam explains what sickle cell disease is: an inherited, lifelong genetic blood condition that affects red blood cells and can cause severe pain, anaemia, jaundice, organ complications, strokes, and unpredictable crises. She also shares her own journey, from being diagnosed at the age of three to learning how to manage energy, medication, travel, education, work, and daily life with a chronic and often invisible condition.

We talk about:

❤️ what sickle cell disease means in everyday life
🩸 pain crises, fatigue, anaemia, and invisible symptoms
🌍 sickle cell disease across different countries and communities
🏥 navigating healthcare systems in the UK and Portugal
🧾 why patients may need to carry medical letters and emergency care plans
🤝 patient advocacy and community education
🧪 clinical trials, trust, and access to research
🗣️ why healthcare professionals need to listen to patient expertise
📚 how medical translation, linguistic validation, and patient-facing communication can support better care

A key message from this episode is simple but powerful:

Patients are experts in their own lives.

When patients explain what they need, how their body reacts, or what has worked for them before, this is not arrogance. It is survival, self-advocacy, and essential medical information.

This MedTalk is for healthcare professionals, medical translators, clinical trial professionals, patient advocates, researchers, and anyone who wants to understand sickle cell disease beyond the textbook definition.

Thank you, Miriam, for sharing your story, your expertise, and your advocacy work with such clarity and honesty.

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