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DEI what does it stand for? We recently discussed the letter ‘E’ and shared how Equity is a part of our community. To complete our discussion and meaning of this acronym, we will discuss the letter ‘I’.
Inclusion: the act of being included
In 2009 a group of parents started the Dravet Syndrome Foundation and at that time there were no treatments specifically for Dravet syndrome. These parents set their sights high — to advance understanding of this little-known disease, to create new treatments and specialized care for their children, and to find a cure. The creation of this foundation opened the doors so that this rare disease can gain the attention it desperately needed and begin to be included as a condition that warranted clinical research; ultimately seeking to have treatment options specifically for Dravet syndrome. In the ensuing years, the fundraising and commitment of the Dravet syndrome community has enabled DSF to support fundamental research in the laboratory that has led to groundbreaking discoveries. In 2010 DSF was awarded its first research grant and with this inclusion Dravet syndrome patient families can finally say that we have three FDA approved treatments and others are in process through clinical trials. We continue to fight for a cure.
Inclusion efforts within insurance companies is another area that many Dravet syndrome caregivers have struggled with. We often remind others that Dravet syndrome is much more than seizures, many are diagnosed with comorbidities that contribute to the need of additional treatment services, therapies, or medical equipment. For approximately 40 years clinicians were billing under the generic billing code of epilepsy and families were often denied services or equipment needed. In 2021, Dravet syndrome was issued ICD-10 codes. Having the appropriate coding in a patient’s medical record may also make it easier to secure coverage for indicated medications and medical testing required for recognized co-morbidities of the disease.
Inclusion for families of special needs children is also very important. Being a caregiver of a special needs child, especially a child with a rare disease can be difficult emotionally and mentally. Oftentimes, caring for someone with Dravet syndrome calls for lots of appointments, therapies, ER visits, etc. that will limit the time available to participate in social or recreational activities with others. It can be overwhelming, lonely, and it can be a struggle to find someone to relate to. To assist with this, DSF offers support groups on social media, has monthly video calls, Heart-to-Heart, and also plans events to provide a support system for parents, caregivers, siblings and our Dravet warriors. We understand that while each journey may be different, having a friend to talk to about our experience, worries, or even to seek advice from is extremely important.
Patient families face many barriers when it comes to finding fun inclusive activities. Whether it’s mobility related or due to an environment containing seizure triggers, spending quality time outside can be difficult. In our private Facebook support groups, now offered in English and Spanish, we also share inclusive activities for families to participate in. We look to encourage everyone to focus on finding happiness amongst the storm that seizures and their unpredictability can bring. In our groups you can find beautiful stories about adventures taken or information about a local organization offering activities or resources for our families.
Although it may be my title as the DEI Coordinator of DSF Diversity, Equality, and Inclusion applies to all of us. I encourage us all to be part of the social movement that is occurring within our society. October is Global Diversity Awareness Month and we will look to learn more about each other and celebrate our differences and most importantly identify how we can support each other.
Should you have any questions, suggestions or concerns, please feel free to contact me at: Tatiana@Dravetfoundation.org