EB & Rare Disease Day 2014

This month marks Rare Disease Day, an annual day which observes the prevalence of rare diseases and their impact on the people living with them. It was started six years ago by EURORDIS and the Council of National Alliances, and its recognition has grown beyond being a European and become a world occasion with more than 1,000 events held since its launch.


The focus behind this one day is in line with what EB patients, families and their advocates set out to do every day – educate people; inspire others to become involved in advocacy, fundraising and research; and instill a better understanding of the kinds of challenges and needs facing the rare disease community.


Rare Disease Day has also been embraced by those in highly influential roles to garner more attention for the topic, including politicians and entertainers. Last year, over 70 countries from around the globe took part in what became the largest Rare Disease Day ever. On its own website, the coordinators of the event state their ultimate goal is for the World Health Organization to recognize the last day of February each year as one of its official days to help build international awareness of rare diseases.


Here in the EB community, it can be a perfect opportunity for families impacted by EB to speak up. Families could take the occasion to contact their elected representatives about any upcoming or current bills that could impact insurance coverage or funding that might benefit those afflicted with rare diseases.


So what other things could you do on a smaller scale to promote Rare Disease Day in your own community? Share information about the international event with your child’s school to explore opportunities to promote it there. Contact local newspapers and television channels. Reach out to any civic or social groups in the area to encourage them to host their own awareness event. Let your company’s HR department know about the annual event and inquire about any opportunities to promote there. Take to your social media channels like Twitter, Facebook, Google+ and LinkedIn and spread the word!


To read up about Rare Disease Day 2014, be sure to visit the official website at www.rarediseaseday.org.

The Facts about Depression

*This content is provided for informational purposes only and is not intended to be a substitute for the advice of your health care or mental health provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your health care or mental health provider.

For some EB patients and their families, it can be common for them to experience feelings of isolation or loneliness. When your own day-to-day routines and activities contrast so much from your neighbors, co-workers or the kids you go to school with, it can sometimes make one feel alone.

It’s important for these patients and caregivers as well as the friends and family members supporting them to understand the potential for depression, what it is, how to recognize it and where support can be found.

The basics:

  • What is depression? According to the World Health Organization (WHO), depression is a common mental disorder that can become chronic or recurring and presents itself as displays of sadness or disinterest and impacts people of all genders, ages and backgrounds.
  • How can you recognize it? A person experiencing depression often shows signs of some of the most common physical, emotional and anxiety symptoms of depression as noted by WebMD. Among them are the following:
    • Headaches
    • Back aches
    • Digestive ailments
    • Irritability
    • Depressed mood throughout the day
    • Frequent signs of fatigue or energy loss
    • Lessened concentration or focus
    • Feelings of worthlessness or guilt
    • Differences in sleep patterns (insomnia or excess sleep)
    • Signs of disinterest in daily routines
    • Recurring thoughts of death or suicide
    • Agitated restlessness or slowed-down movement or activity.
    • Significant weight loss or gain
  • What can you do to get help? The Centers for Disease Control and Prevention (CDC) points out that many adults suffering from depression or anxiety have found treatment with anti-depressant drugs or other mood stabilizers, psychotherapy or use of both treatment methods to help alleviate symptoms. Another avenue is to reach out to online communities (such as through WebMD) or local entities such as DebRA for any information they may have about available support groups in your area. Talking with others who can relate to the emotional and physical symptoms you may be feeling, even if faced with different challenges, can provide a healthy channel for communication and a rich resource for coping strategies and peer support.

Depression is nothing to be ashamed of or hidden, but something to be addressed and treated. It can be an unexpected derivative of living with EB, as a patient or as a caregiver or family member. If you or someone you know requires immediate emergency assistance and shows signs of extreme depression, call 9-1-1 or the 24-hour National Suicide Prevention Line (1-800-273-TALK) or go to your nearest emergency room or healthcare provider for direct help.


Centers for Disease Control and Prevention (CDC)
World Health Organization (WHO)

Related Posts:

Identify and Manage Caregiver Burnout
What to Expect in Support Groups
Addressing Confusion and Questions about EB