Connecting with families who share the same genetic condition as my daughter has been a life-line in so many ways. In the first few weeks after Eva's diagnosis, I scoured the internet looking for any scientific article, journal review, photograph, video, etc. that referenced BPAN. It took me a few weeks before I took the plunge and actually ventured onto the BPAN Facebook Support Group,(https://www.facebook.com/groups/BPAN.NBIA/) and even then, I did not initially feel comfortable asking questions or sharing information.
Now, nearly 8 months since Eva's diagnosis, our BPAN Facebook has become such an important part of connecting with other families throughout the US and the world. Although my initial trepidation was understandable, I now understand that the families who have loved ones living with BPAN are quite literally, the only people who understand so much of what I have experienced and am currently going through.
In this time and age of the Internet, I have been warned (even by very esteemed medical professionals) to be wary of the dangers of the information received within "these groups"; they can disseminate inaccurate information - they might even cause families to identify symptoms in their child which are not "real". While this may be a pitfall to be avoided, what I have found is that the BPAN families and parents are a wealth of information, information which is vital to the care and treatment of my daughter. Without dismissing the importance of seeking professional medical counseling and guidance, I have found that many BPAN families are oftentimes better educated and informed than most of the local specialists I have seen. Given the complexity of BPAN and its rarity, I have yet to encounter a medical professional in Southern Florida who has even heard of BPAN. I have to believe, that without the information provided by the families on our Facebook Support Group, I might still be completely in the dark.
Today I am so grateful I took a leap of faith and connected with other families. I know that I never have to do this alone.
To learn more about how you can connect via Facebook, please visit: