Share Your Story

If you, or someone you care for, has been diagnosed with WHIM syndrome, please consider sharing your story. Many people living with or caring for someone with WHIM syndrome have never met someone with their same diagnosis and want to learn about other people’s experiences.

What was your path to diagnosis? What symptoms are you living with and how have they impacted your daily life? Have you and others in your family taken a genetic test? If so, how has it impacted your WHIM syndrome journey? What advice do you have for anyone else living with WHIM syndrome or newly diagnosed?

    Submissions will be reviewed and may be edited for length, or posted in entirety on this website and/or on social media channels. Submissions may also be summarized and converted into illustrations. It is not guaranteed that submissions will be posted. You will be notified via the email address provided if your submission is posted. Please do not include any mentions of medication names, medication side effects, names of other people (family or physicians) or experiences on clinical trials that are currently active.

    If your submission is posted and you want it taken down at any time, for any reason, please email:

    WHIM Syndrome Stories

    Many people living with WHIM syndrome had frequent infections as children and were often misdiagnosed for many years. Those who are diagnosed sooner often have better outcomes. The symptoms and severity may differ widely, but one thing everyone has in common is hope for the future. See their stories here.




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