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EB care: eye, dental, surgery and cancer support
This page offers information on accessing specific healthcare support and information for epidermolysis bullosa (EB) eye care, dentistry, surgery, and cancer management. If you’re looking for other EB treatment and management information, such as guidance on pain and itch relief, please find out more here.
Contents
Eye care for EB
EB and dentistry
Cancer and EB management
Surgery and recovery in EB
Eye care for EB
For information about eye care, please seek advice and support from your EB specialist healthcare team. We would recommend that you contact your healthcare team if you have any questions.
If you are not currently under the care of an EB specialist healthcare team, then you will need to ask your GP for a referral. Please note this referral is free – there is no cost for you or your GP.
To find the details of your local GP, please visit the NHS website.
Our website also offers more guidance on managing medical care with EB, and information about all the different types of EB, if you need it.
You can also contact our EB Community Support Team. We’re here to help however we can with information, guidance and advocacy for the EB community.
Extra resources
Clinical Practice Guidelines (CPGs)
CPGs on various topics providing recommendations for areas of care for people living with EB, aimed at both healthcare professionals and people with EB and their families.Great Ormond Street Hospital (GOSH)
Information about the EB care available through GOSH and the NHS, including some guidance on eye care.EB and dentistry
If you need additional support with dental care and EB, please seek advice and support from your EB specialist healthcare team. We recommend that you contact your EB healthcare team if you have any dental care questions.
If you aren’t already under the care of one of the EB specialist centres, you will need to ask your GP for a referral.
Please note this referral is free – there is no cost for you or your GP. To find the details of your local GP, please visit the NHS website.
If you need more guidance on accessing specialist healthcare so you can access care from one of the EB centres, please visit our managing medical care page.
As always, please do contact the DEBRA EB Community Support Team if you need any further guidance or support.
Cancer and EB management
People with EB can have an increased risk of developing skin cancer. To get the support you need to manage cancer as someone living with EB, please seek advice and support from your EB specialist healthcare team. We recommend that you speak with your EB team, as they are the experts to help guide you through this situation and answer any questions.
If you are not currently under the care of an EB specialist healthcare team, then you will need to ask your GP for a referral. Please note this referral is free – there is no cost for you or your GP.
To find the details of your local GP, please visit the NHS website.
Our website also has information on every type of EB if you’re looking to find out more.
Here at DEBRA UK, you can also contact our EB Community Support Team. In addition to all the practical support we can provide – such as financial support through grants, and benefits like offering respite at our beautiful range of holiday homes, we are also here to offer emotional support, guidance and advocacy if you need it.
Extra resources
Clinical Practice Guidelines (CPG) for cancer management
There is also the EB CPG on cancer management. This is aimed at not just healthcare professionals but people living with EB and their families as well. It covers cancer diagnosis and management to help improve quality of life.Great Ormond Street Hospital (GOSH)
Information about the EB care available through GOSH and the NHS, including cancer management.Surgery and recovery in EB
Similarly to the other areas of care mentioned, please seek advice and support from your EB specialist healthcare team if you need support with preparing for surgery or recovery. If you have any questions about surgery, it’s best that you contact your EB healthcare team.
If you are not currently under the care of an EB specialist healthcare team, then you will need to ask your GP for a referral. Please note this referral is free – there is no cost for you or your GP.
To find the details of your local GP, please visit the NHS website.
You can also find information about all types of EB on our website, as well as links to all the EB Clinical Practice Guidelines offering recommendations for different areas of healthcare.
If you’re looking for any other guidance, support or advocacy, please do contact the DEBRA EB Community Support Team. We’re here to help however we can.