Epidermolysis bullosa

Описание: Epidermolysis bullosa
Epidermolysis bullosa (EB) is a very rare genetic skin condition and in worst cases can be fatal . Its diagnosed from birth by the neonatal team . This condition has 3 types and can vary from mild to severe. At present there is no cure of the condition and treatment is targeted to prevent complications .
In Pakistan there is lack of support for the children (and their parents ) with the condition .These children and their families need ongoing support with regards to treatment alongside the psychological impact it has on the children and their parents .Sadly not enough is being done .
Faiza Ambreen is working to build a platform for children with EB and their families. She is building a platform “DEBRA Pakistan “ for those who are affected . DEBRA is an umbrella organisation for a worldwide network that work on behalf of those affected by the rare genetic skin blistering condition, Epidermolysis Bullosa (EB).
Faiza lost her 3 year old daughter “Harram” with this condition and now wants to support families in Pakistan with the condition . Harram is her source of inspiration and strength .
Faiza contacted me to provide support as far as diet & nutrition is concerned . It is not possible to cure EB with a diet though by giving optimum nutrition we can give the child best chance of grown and healing .
Ive made a video to support parents with diet and nutrition of their child . I’m not sure if any other dietitian has done this . I’ve made the video in Urdu for the target audience . This video will provide general advice and probably is not the answer to every situation . Though surely it will give a guideline .
Being a dietitian this was the only support I could give to these children .Please extend your support in what so ever capacity you are in .
The video can also be viewed on my my Facebook group and page , ( Aap Ki Dietitian ) , DEBRA Pakistan Facebook group and page .