We understand that losing a loved one is difficult, so we are here to help if you need practical or emotional support.
Contact your DEBRA EB Community Support Manager for one-to-one help, talking through grief and emotional issues. Losing a loved one can also involve financial pressures and we would be happy to talk you through your options and provide practical advice.
If necessary, your EB Community Support Manager can assist family members with a referral to bereavement counselling and help you to access the support already available in your local area.
Some people find writing a eulogy or poem is helpful during the healing process, so we have created remembrance areas – one for children and young people (up to 16 years of age) and one for adults – offering families a chance to celebrate the life of a loved one with EB who has died.
Your DEBRA Community Support Manager can be on hand to offer a listening ear when grieving your loved one, refer you to other groups for further support in your local area, help make funeral arrangements, work with you to access benefits entitlements (and possibly grants), as well as assist in creating a DEBRA remembrance page.
Please contact your Community Support Manager for more information on how you can be supported during this difficult time.
The following words are used throughout this section of the website:
Moving forward in life, whilst difficult, is a necessary and eventual step in coping with the loss of a loved one.
Grief is individual. The way a person dies may have a strong impact on their loved ones. Someone who is grieving may experience some or all of the following emotions – shock, denial, anger, fear, guilt and relief.
Writing a eulogy to remember your loved one can be intimidating or overwhelming. Take your time and think about what you want to say about your loved one; write from the heart.
Taking care of your loved one after they die can be an extra expense many families cannot afford, and there are many decisions that can make a funeral more or less expensive. Find out more about the funeral costs support available.
Find out more about the bereavement support resources available.
There are several topics that many people never want to discuss – death is often one. Planning for your own or a loved one’s death, especially if you are healthy and happy, can seem scary and might bring up a lot of emotions.