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EB and sexuality
Living with any type of EB should not deny your desire or ability to participate in sexual activities or express your own sexuality. However, the type and severity of your EB could impact the approach needed to ensure good sexual health.
Below you can find information about both EB-specific and general sexual health advice and support that you may be able to access.
EB sexual health support
If you have any type of EB, it is recommended that you consult with your GP or specialist EB healthcare team, if you are under their care, to determine an approach that addresses all of the sexual health factors that are relevant to the general population, but also includes an EB-specific assessment and any associated interventions that could help promote good sexual health.
The EB healthcare team can support you with both the physical aspect of sex but also may be able to support you with psychological support around sexual expression.
DEBRA International, the umbrella organisation for the global network of DEBRA’s, has created a Clinical Practical Guideline (CPG), which explores the current understanding of EB and sexuality and makes preliminary recommendations for assessment and intervention strategies. This guide is written for a healthcare professionals’ audience but may also be of interest to individuals living with EB, their families, and carers.
The DEBRA EB Community Support Team can also provide you with emotional support.
Non-EB sexual health support
The NHS run sexual health services which are free and available to everyone, regardless of sex, age, ethnic origin and sexual orientation.
However please note that awareness and understanding of EB amongst the healthcare professionals running these services may be very low or even non-existent and so it is highly likely that you will need to educate them about your EB. They will however be able to offer you general sexual health support.
For more information about the sexual health services available for free through the NHS, please visit the NHS guide to sexual health services.
Find a sexual health clinic near you:
Sexual dysfunction and EB
Sexual dysfunction is where there is a persistent, recurrent problems with sexual response, desire, orgasm or pain that causes distress to you or strain to your relationship with your partner.
Support is available though, either through your GP, the specialist EB healthcare centres, or through a sexual health clinic, and some also offer sexual counselling.