Amplify Sickle Cell Voices International Inc - ASVI

12/10/2026

The pains of sickle cell disorder live with us,
So, sometimes, we learn to sleep in pain and wake up in pain.

21/09/2026

Did you know that sickle cell disorder causes Hand and Foot Syndrome (Dactylitis)?
My first blood transfusion in life was at a tender age because of hand and foot syndrome.

Today is Day 21 of Sickle Cell Awareness Month.

To know about sickle cell disorder and its challenges,
Get your copy of the book,
A LIFE WITH SICKLE CELL ANAEMIA,
At a discounted price of NGN1,000 or US$1,
Available on Selar as an ebook via this link:

https://selar.com/rvpk

18/09/2026

I say it again and again,
Because I believe and know it,
Again and again,
We shall soon see the end of sickle cell disorder.

15/09/2026

Do you know that sickle cell disorder can cause retinopathy?
(I was diagnosed with early sickle cell retinopathy in 2022 and had laser therapy.)
Many people are aware of diabetic retinopathy and hypertensive retinopathy,
But very few people are aware of sickle cell retinopathy.
This is why we should educate people with sickle cell disorder and recommend annual eye screening.

Today is Day 15 of Sickle Cell Awareness Month.

To know about sickle cell disorder and its challenges,
Get your copy of the book,
A LIFE WITH SICKLE CELL ANAEMIA
At a discounted price of NGN 1,000 or US$1,
Available on Selar as an ebook via this link:

This book gives detailed information about sickle cell disorder, the chronological history of it, some sickle cell experiences of the author corroborated with scientific information such as pubertal delay, pica, priapism, chronic leg ulcer, chronic fatigue syndrome, epistaxis, and poems expressing t...

13/09/2026

Sometimes, or most times,
The outcome of your day changes from the plan for your day
Because of sickle cell disorder.

10/09/2026

The Journey Towards Curative Therapies
📅 Friday, 11 September 2026
⏰ 11:45am AEST | 💻 Zoom Webinar

This will be one of the most important and deeply personal sessions of our conference — because we will hear directly from people whose lives have been shaped by sickle cell disease.

We will hear from:

🔹 A 17-year-old who underwent a bone marrow transplant and will share how her life has changed since being cured of sickle cell disease.

🔹 A mother who took extraordinary measures to prevent her second child from being born with sickle cell disease, sharing the difficult decisions families are sometimes forced to make.

🔹 A caregiver of two children living with sickle cell disease, both experiencing severe complications and now facing a future where curative treatment may be their only remaining option.

🔹 A caregiver currently supporting her child through a bone marrow transplant, sharing the realities, challenges, hopes and fears of going through this journey.

🔹 Our moderator, a mother and advocate, who is hoping to see gene therapy and gene editing become accessible in Australia — because, like many families, her daughter has limited options to prevent the ongoing symptoms, pain and complications of sickle cell disease.

This is more than a panel discussion.

These are real stories. Real decisions. Real challenges. And real hope for a cure.

As Australia moves forward with newborn screening, we must also ask:

What happens after diagnosis?
How do we ensure children are identified early and given access to the best treatments?
And how do we make curative therapies available to those who need them?

🎙️ Come and listen. Come and learn. Come and understand why the journey towards curative therapies matters.

Register for the 5th Australian Sickle Cell Conference and be part of this important conversation:
https://events.humanitix.com/asca-5th-sickle-cell-conference



Thank you to all the panellists willing to share their stories 🙏🏾 🙏🏾🙏🏾🙏🏾🙏🏾

NOTE: Photo for illustration purposes only‼️

08/09/2026

03/09/2026

📢 REMINDER: 5th Australian Sickle Cell Conference - Meet our Speaker ‼️

We are just one week away from the 5th Australian Sickle Cell Conference, taking place Friday, 11 September 2026, from 11:00am to 3:00pm AEST, virtually.

🎯 Theme: Curative Therapies for Sickle Cell Disease: Opportunities and Challenges in Australia

This year’s conference will explore the future of sickle cell disease care in Australia, including:

🧬 Gene therapy and gene editing
🩸 Stem cell transplantation (BMT/HSCT)
👶 What happens after newborn screening?
🏥 Early intervention and coordinated care
🇦🇺 Access to curative therapies in the Australian context
🤝 Opportunities and challenges for patients, families and healthcare professionals

We are pleased to bring together leading clinicians, researchers, advocates, policymakers and people with lived experience to discuss how Australia can improve access to curative therapies and better outcomes for people living with sickle cell disease.

🎟️ If you have not registered yet, please secure your place and join us for this important conversation. Register via https://events.humanitix.com/asca-5th-sickle-cell-conference

📅 Friday, 11 September 2026
⏰ 11:00am – 3:00pm AEST
💻 Virtual Conference

We look forward to welcoming you and continuing the conversation about transforming sickle cell care in Australia.

Australian Sickle Cell Advocacy Inc. (ASCA)

03/09/2026

Today is the 3rd day of Sickle Cell Awareness Month.

Do you know that sickle cell disorder causes chronic fatigue syndrome?
Chronic fatigue syndrome is a disease of exclusion with the following symptoms:
1. Chronic fatigue that does not resolve with rest. Rather, the more you sleep, the weaker you feel when you wake up.
2. Unrefreshing sleep - sleeping for longer hours does not guarantee you will be refreshed.
3. Headaches, sometimes migraine-like headaches.
4. Short-term loss of memory or concentration.
5. Myalgia.
6. Polyarthralgia
7. Chronic anorexia
8. Etc.

Sickle cell disorder is not the only cause of chronic fatigue syndrome. Other causes are chronic diseases (thyroid hormone disorder, chronic organ diseases), post-infection (HIV/AIDS, COVID-19 described as post-COVID or long COVID, etc.

To learn more about chronic fatigue syndrome, click the link:

Fatigue is among the top 10 reasons patients visit primary care offices, and it significantly affects patients' well-being and occupational safety. A comprehensive history and cardiopulmonary, neurologic, and skin examinations help guide the workup and diagnosis. Fatigue can be classified as physiol...