Updated Recommended Blood Work for those with EB

**New Release January 2024**

Recommend Blood Work for All Forms of EB starting at age 1 OR for those who have never had blood work done before

TSH

T4 Free

Vit D3

CRP

Sed Rate

CMP (comprehensive metabolic which includes liver and kidney functions)

CBC w/ Differential 

Vit C

B12

Zinc

Other Yearly Tests that are Recommended for all forms of EB

EKG 

Echocardiogram

Dexa Scan

Infants with Junctional EB should have the following done starting at age 1 month due to malnutrition issues and months and as needed going forward:

CRP

Sed Rate

CMP (comprehensive metabolic which includes liver and kidney functions)

CBC w/ Differential 

Vit C

Zinc

Vit D3

Additional recommended test for those with RDEB, JEB or severe EBS and/or have a history of anemia, liver and/or renal issues

Ammonia

Full Iron Panel

Copper

Expanded Hepatic Panel

EB knowledgeable nutritionists are recommending the following nutrients, micronutrients and heavy metal panels at least once every 1-3 years and then repeat as needed based on previous results, patients nutritional status and overall health. 

• Vitamin A

• B Vitamins

• Thiamin – Vitamin B1

• Riboflavin – Vitamin B2

• Niacin – Vitamin B3

• Pantothenic Acid – Vitamin B5

• Vitamin B6

• Biotin – Vitamin B7

• Folate (Folic Acid)

• Vitamin B12

• Vitamin C

• Vitamin D

• Vitamin E

• Vitamin K

• Choline

• Calcium

• Chloride

• Chromium

• Copper

• Fluoride

• Iodine

• Iron

• Magnesium

• Manganese

• Molybdenum

• Nickel

• Phosphorus

• Potassium

• Selenium

• Sodium

• Zinc

 

Heavy Metals: Arsenic, Cadmium, Cobalt, Lead, Mercury