Tuesday, January 15, 2019
Everyone has a story. With that story comes a story worth telling. A story that can help a person during the most difficult moments in their lives. A story that can bring awareness and make others feel like they are not alone. Stories can help make a difference in the world. Parents of children with a rare condition often feel alone, judged, and frustrated until they meet other parents sharing a similar journey. The beginning of a new diagnosis can be a scary time for the family and your diagnosed child. You feel like enough questions aren't answered and you wish you can do anything to take the pain away. Connecting with other parents and families who are experiencing the same diagnosis can help make the journey a little less scary. Being able to talk to others with whom you can relate can help with the emotional challenges a rare disease can bring. Being part of a support group or online community can help connect you with other families who may live close or near the same area as you. A support group can help you learn about information you weren't aware of, feel more in control of the situation, and be inspired to wanting to raise more awareness.
The internet is such a useful tool to connect with other families and receive encouragement. Sharing your personal experiences takes courage and also helps you become and advocate for your child. Blount's Disease is an ongoing experience for patients and families. A social connection can help improve our psychological well being. Having a place to come together can create a foundation for effective interactions. Blount disease is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Blount disease, or a subtype of Blount disease, affects less than 200,000 people in the US population.
You don't have to face this journey alone. You never know who you will connect with. Feeling less lonely, less isolated, and not being judged is a huge benefit of support groups. The best part is you can read about other experiences from the comfort of your own home in your pajamas! Happy connecting!
-Angela U., Admin of Blount's Disease Strong
If you or someone you know was recently diagnosed with Blount's Disease feel free to join our closed support group on Facebook at https://www.facebook.com/groups/1633747536929800/