Salim Dellicker is always covered in bandages. That’s because the 4-year-old’s skin is usually raw, itchy and blistered: https://abc11.com/5288919/
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Watch the BBC first on iPlayer 👉 https://bbc.in/iPlayer-Home http://www.justgiving.com/debralifeline Stormchaser Sam Smith presents an appeal on behalf of DEBRA, the UK’s leading charity supporting the 5000 people in the UK who live with the painful genetic skin condition Epidermolysis Bullosa (EB). This genetic condion leaves her skin is so fragile, the slightest touch or rub can result in painful blisters and open wounds. Sam talks about life with the life limiting condition and how DEBRA have enabled her to live as full a life as possible – even taking in storm chasing.

The film features Jenna, who describes the value of having a DEBRA Community Support worker who helped her learn to care for her baby son Freddie and change his dressings, even when he is in pain. DEBRA also arranged a grant so the family could install carpet that wouldn’t chafe Freddie’s skin. Sam relates to 11-year-old Josh, who is determined not to let his skin condition rule his life. DEBRA has enabled Josh’s family to go on holiday. The charity is appealing for support for its work giving direct help to people living with EB, and for the research it funds into a possible cure.

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Learn more: http://www.danafarberbostonchildrens.org/thalassemia

Tracy Antonelli was diagnosed with thalassemia at the age of 4; her body can’t make enough oxygen-carrying red blood cells. When she and her husband were ready to start a family, they looked to China, where thalassemia is relatively prevalent, and found three special girls.

The care that the girls now receive at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center Includes regular blood transfusions, medication to remove excess iron from their bodies, and careful monitoring.

The thalassemias are a group of inherited blood disorders in which the genes that produce hemoglobin, the protein in red blood cells that carries oxygen from the lungs to all parts of the body, are broken. As a result, the red blood cells do not contain enough hemoglobin, causing anemia that can range from mild to life threatening. Thalassemia can come in different forms depending on the genetic mutations causing it. The transfusion-dependent form, also called thalassemia major or Cooley’s Anemia, requires lifelong follow-up care and regular blood transfusions. Some other forms are more readily managed and may require little or no treatment.

Thalassemia Treatment at Dana-Farber/Boston Children’s

At the Dana-Farber/Boston Children’s Thalassemia Program, our experts provide comprehensive care for children and adults with all forms of thalassemia. For many appointments and certain procedures, your child also can receive care at one of our satellite offices. Treatment for thalassemia depends on the subtype of the disorder, but may include:

– blood transfusions for anemia, based on severity
– regular and comprehensive monitoring for complications of thalassemia and of treatments
– iron chelation therapy, to remove excess iron from the body
– for certain cases, stem cell transplantation to replace the blood-forming stem cells with the defective hemoglobin gene(s)
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Dickson and Daniel discuss protozoan parasites of minor medical importance, including Babesia, Cystoisopora belli, Cyclospora cayetanensis, Naegleria fowleri, and more.
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