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  1. Information & support
  2. Support for you
  3. End of life & bereavement

End of life & bereavement

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.

DEBRA can help

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.

Terminology

The following words are used throughout this section of the website:

  • Celebrant – a person leading the funeral ceremony or memorial service; may or may not be of a particular faith depending on the wishes of the family.
  • Coroner – a person dedicated to determining a cause of death when the cause is unknown.
  • Eulogy – a written memory, short message or something special to you and your loved one.
  • Faith Leader (Religious Leaders) – a person who carries out a religious funeral ceremony or memorial service.
  • Funeral Director (undertaker) – person who arranges the burial or cremation of the deceased.
  • Mortuary – an area where dead bodies are stored until they are buried or cremated, usually within a hospital or Funeral Director’s facility.
  • Post-mortem (autopsy) – an examination of a dead body to determine the cause of death.
Steps to take when a loved one dies

Steps to take when a loved one dies

Moving forward in life, whilst difficult, is a necessary and eventual step in coping with the loss of a loved one. Read more

Published: 17th February, 2021

Updated: 25th March, 2022

Author: Dana Ingabire

Dealing with grief

Dealing with grief

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. Read more

Published: 17th February, 2021

Updated: 24th January, 2022

Author: Dana Ingabire

Remembering your loved one

Remembering your loved one

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. Read more

Published: 17th February, 2021

Updated: 25th March, 2022

Author: Dana Ingabire

Funeral costs

Funeral costs

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. Read more

Published: 17th February, 2021

Updated: 25th March, 2022

Author: Dana Ingabire

Bereavement resources

Bereavement resources

Find out more about the bereavement support resources available. Read more

Published: 17th February, 2021

Updated: 24th January, 2022

Author: Dana Ingabire

Making plans for your death

Making plans for your death

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. Read more

Published: 17th February, 2021

Updated: 25th March, 2022

Author: Dana Ingabire

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Showing 10 of 6

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  • Furniture collection

    Furniture collection

    Donate your unwanted furniture, homewares and electrical items using our free furniture collection service. With safety measures in place, donating your items couldn’t be easier.

  • Find a store

    Find a store

    Find your nearest DEBRA charity shop and help fight EB. Our stores sell affordable and quality pre-loved clothing, furniture, electrical items, books, homeware and more.

  • Items we do not sell

    Find out what health and safety standards and labels we require and which items we cannot sell.

  • Contact Us

  • What is EB?

    What is EB?

    Epidermolysis Bullosa (EB) is a painful genetic skin blistering condition with no cure. Find out about different types of EB, causes, symptoms and treatments.

  • Donate items

    Donate items

    Donate your quality pre-loved items, including clothes, furniture and homeware to keep them from landfill and help us to raise vital funds through our stores. Find out more about how to donate items today.

  • Work with us

    Work with us

    DEBRA can only continue its vital work with the support and encouragement of the local community and with the hard work of its employees and volunteers.

  • Who we are

    Who we are

    DEBRA is the national charity that funds research and healthcare to support individuals and families affected by Epidermolysis Bullosa (EB)

  • Dystrophic EB (DEB)

    Dystrophic EB (DEB)

    Can be mild or severe (dominant or recessive). The defective gene and fragility occurs below the basement membrane within the superficial dermis.

  • Our history

    Our history

    DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had Dystrophic EB – the charity was the world’s first EB patient support group.

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