- Please note:
This is curated community-generated content. The advice given here may not reflect the official stance of DBAS UK.
This information does not constitute or replace medical advice. Always consult a medical professional.
What's the best piece of advice for parents or patients who have been newly diagnosed with Diamond Blackfan Anaemia Syndrome?
At our annual DBAS Family Conference weekend 2025, we hosted a poster workshop session. Our patients and families shared the following help and advice:
- You’re not alone
- Don’t panic, take a deep breath
- Find your DBAS family on Facebook, Instagram, or contact though this site
- Don’t be afraid to ask questions
- Take it one step at a time, it can be easy to get overwhelmed with all the information and advice.
- Focus on the things you can control
- Don’t be fobbed off with incorrect information from anyone (including doctors, consultants)
- Get referred by your doctor to the expert team at St Mary’s Hospital, London
- Trust your instincts, your child, you know.
- Come to the DBAS Family Weekend
- Don’t let Hb consistently drop below 90
- Don’t compare yourself to others – it’s your own journey – but do listen to experiences
- Be kind to yourself
- Challenge doctors if you’re not happy with something
- Speak to other families
- Engage in the DBAS UK Facebook group
- Get life insurance and income protection (e.g. LV, Aviva) with Parent and Child Cover for Major Organ transplant
- Share knowledge and information
Best places to go for DBAS advice?
- DBAS UK Facebook page
- Diamond Blackfan Anaemia in the UK Facebook Group
- Your Consultant
- DBAS nurse
- DBAS Resources section
- Attend the DBAS Family Weekend
- Yvonne Harrington & Kelly Hennessey @ St. Mary’s, London
- Beth Payne
- Recent medical journals (2020 or newer)
- DBAS UK’s internationally ratified Care Pathways for Adults and Children and Guidelines
- NOT: GP, Google, older research journals
