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Patient Stories
Stories connect. This page is dedicated to our global community of patients and families who are all impacted by SDS in various ways. No matter whether your SDS is "mild or severe", your story matters! We want to paint a picture of what SDS looks like and how varied the experiences are -- so that more patients can be diagnosed sooner and benefit from community support and better treatments. We also want to show the world that the SDS community is strong and worthy of investment into new therapies and cures. Join us by sharing YOUR story.
Contact the SDS Alliance on Facebook or email us at connect@SDSAlliance.org and fill out this release form. We are publishing patient stories on the SDS Alliance blog, Facebook page, Twitter, and more. You can make it as personal as you like with names, photos, and more, or keep it more private to fit your preference. We will help with editing and layout. We will work with you.
SDS Patient LENS Study Now Open
Apply today. SDS Alliance open a new qualitative research study -- the SDS Patient LENS Study -- to understand the unique lived experiences,
Register for Community Webinar and Q&A to prep for SDS PFDD Meeting
Join the community webinar and Q&A session to learn all about the EL-PFDD meeting on Shwachman-Diamond Syndrome and get answers about it all
Amazing Opportunity to Share SDS Patient Perspectives with FDA: EL-PFDD Meeting Planned June 4th, 2025
Be a Speaker/Panelist! The FDA has accepted our request to hold an Externally-Led Patient Focused Drug Development Meeting for SDS on 6/4/25
SDS-POPS 2024 Recordings and Resources Now Available! SDS Alliance Blog 2024-12-08
In this issue: SDS-POPS 2024 covers a wider range of topics, including SDS patient voice, stories, film, and advocacy, and SDS research and
Octavian's SDS Story: A Rare Gem with EFL1
"We have reached the stage of acceptance and trying to live life the fullest despite SDS" Shares Octavian's dad, Raul. Read this Romanian...
Alex's SDS Story and Diagnostic Odyssey (US)
"My journey as a mother of a child with a rare disease began when I had my 20-week ultrasound while pregnant with my son Alex", shares...
How Elijah inspired Hero Kids in the Making - an SDS Story from the US
I wanted my son to see himself as a brave hero overcoming his reasonable fears associated with the pain and uncharted aspects of his medical
2023 Annual Global Virtual Fundraiser - 4 Million Steps Closer to #CureSDS - Huge Success
This October, we conducted the 4th annual global virtual fundraiser to support SDS research. The theme this year was 4 MILLION STEPS...
2022 Annual Global Virtual Fundraiser - Three Million Steps Closer to #CureSDS - Huge Success Again
This October, we conducted the third annual global virtual fundraiser to support SDS research. The theme this year was THREE MILLION...
![Ángel Leonardo's SDS Story from Mexico [Spanish and English]](https://static.wixstatic.com/media/fb8837_e3d8245c5b1b40a6b45a31d0c2de496f~mv2.jpg/v1/fill/w_1168,h_660,fp_0.50_0.50,q_90,enc_auto/fb8837_e3d8245c5b1b40a6b45a31d0c2de496f~mv2.jpg)
Ángel Leonardo's SDS Story from Mexico [Spanish and English]
"My parents taught me that apart from receiving help, I must also help. I have a big heart and I am a teacher of life for my family, a...
A Blast from the Past: Cresta's SDS Story from the US
"I look forward to many more years and to support research to aid SDS patients in the fight against leukemia and Myelodysplastic...
![Mike's SDS Story from The Netherlands [Dutch and English]](https://static.wixstatic.com/media/fb8837_05ba6b5b36394fdbb9db2ab6666c9aae~mv2.png/v1/fill/w_945,h_534,fp_0.50_0.50,q_95,enc_auto/fb8837_05ba6b5b36394fdbb9db2ab6666c9aae~mv2.png)
Mike's SDS Story from The Netherlands [Dutch and English]
"I hope to be able to support and help people where necessary with my story." Shares Mike's mom Irma. Read this Dutch family's story,...
Nora's SDS Story with a Twist: Our Quest for a Cure
"I needed to push for what I thought my daughter needed. I was her voice." Shares Nora's mom Lisa. Read this US family's story, here. If...
2021 Annual Global Virtual Fundraiser - Two Million Steps Closer to #CureSDS - Huge Success
At the end of September, we conducted the second annual global virtual fundraiser to support SDS research. The theme this year was TWO...
Bringing Shwachman-Diamond Syndrome to the Forefront
From the Founder, Dr. Eszter Hars, Ph.D. This week, I had the great honor to be invited to speak on a patient-centered panel at the NICER...
Betty's SDS Story and Journey through Bone Marrow Transplant
"The news of her diagnosis was hard to hear, but it was what it was, so my husband and I just decided to be positive." Shares Betty's mom...
Whitner's SDS Story and Journey to Bone Marrow Transplant
"My journey to diagnosis has been nothing short of an adventure, filled with many obstacles, hundreds of specialists, and much...
Kim and Harrison's SDS Story from the UK
"My son has taught me so much and through him I have grown as a person in stature, confidence and emotional stability. I have seen the...
Ryker's SDS Story and Journey to Bone Marrow Transplant
"Ryker has been such a strong little man throughout these past couple of years with going through so many tests, procedures and doctor...
Healing Henley. An SDS Story told by Henley's mom, Jess
Picture and story about Jess and daughter Henley (who suffers from Shwachman-Diamond Syndrome), preparing for bone marrow transplant.
Carter and Skye's Story: A short video for Maddie Riewordt's Vision
Carter and his sister Skye both have Shwachman-Diamond Syndrome (SDS) and went through stem cell transplants, recently.
Gracie van Brunt – singer, songwriter, and rare disease advocate – shares her story in a podcast.
Gracie van Brunt – singer, songwriter, and rare disease advocate – shares her story in a podcast.
Max's Story: A short insight as part of the 2020 Jeans for Genes
Max and his family are raising awareness for Shwachman-Diamond Syndrome and rare disease by participating again in the 2020 Jeans for Genes
Gracie's Story: Finding my voice and insights into my BMT
Gracie - a young adult SDS patient in the US, shares her story about finding her voice and her bone marrow transplant.
About a mother's relentless quest for a cure for SDS
By Emily Williams / Boston Children's Hospital In this post, you can learn about the passion and efforts of a mother to a young daughter...
Teen author dedicates a children’s book to her twin brother with Shwachman-Diamond syndrome
Boston Children's Hospital's Patient Stories section features an SDS family's story. Read the whole story, here. Sophia Namazy, 14, wrote...
How families are reshaping Shwachman-Diamond syndrome research
By Emily Williams / Boston Children's Hospital In this post, you can learn about the experiences of two families affected by...
Share with us your SDS journey. It is a wonderful resources for new families and old friends alike.
We can help you write if you like. Simply contact us at CureSDS@gmail.com. Welcome to your blog post. Use this space to connect with your...
Do you have an SDS story to tell? Would you like to share your SDS journey with the SDS community?
Let us help you create a blog post. Email us today at CureSDS@gmail.com. Welcome to your blog post. Use this space to connect with your...
After Amazon mix-up, man becomes advocate for little boy with Shwachman-Diamond Syndrome
In 2018, a wonderful friendship unfolded as a result of a mishap. Now the SDS family got an extra super advocate as a result. Read the...
A mom from NZ explains how her rock ‘n roll lifestyle was turned upside down by SDS.
Written for The Spinoff magazine (NZ) / By Kiki Van Newtown In this story, you can learn about this Rock 'n Roll family's journey with...
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