Epidermolysis Bullosa (EB) Center
The University of Minnesota Masonic Children's Hospital is an international leader in the treatment of epidermolysis bullosa (EB), an often life-threatening skin-blistering disorder.
If your child has severe epidermolysis bullosa, we’re here to help. The University of Minnesota Masonic Children’s Hospital offers a team of specialists and staff who have over 10 years of experience coordinating care and managing the unique needs of EB patients.
While the majority of EB treatments focus on topical therapies, we were the first to explore using bone marrow transplant to provide a whole-body therapy that could address symptoms inside and out. Since 2007, we have treated over 60 patients.
Our physicians work closely with our scientists and researchers worldwide to continually improve care and treatment options.
EB Specialty Clinic
EB Specialty Clinic
Children brought to our center with a confirmed diagnosis of EB will receive a thorough examination to evaluate the severity of their EB. This may include skin biopsies, blister testing, medical photography, and blood tests. Patients will be also seen by specialists from a variety of different services depending on their needs. Common examples include seeing gastroenterologist for esophageal strictures or an ophthalmologist for corneal injury.
We primarily treat the most severe forms of recessive dystrophic epidermolysis bullosa and some kinds of junctional epidermolysis bullosa. To evaluate if the therapies we offer are appropriate for your situation, we will need a genetic diagnosis of the disorder. If you are coming to our center without a confirmed diagnosis, we will help you navigate the necessary testing and ensure you have all of the resources needed to care for your child. Sometimes it is better to have the testing done prior to the visit. We can also help you connect with testing facilities: https://www.genedx.com/test-catalog/available-tests/epidermolysis-bullosa-eb-xomedxslice/
We know that managing the complex care needs for your child can be overwhelming. We can relieve some of this burden by taking the lead on managing complete care for your child.
- Our nurse coordinator will help answer questions, collect records from outside institutions, and verify insurance benefits.
- Our nurse coordinator will also help you identify needed specialists and get appointments scheduled. We routinely arrange multiple appointments on the same day using a system designed to keep your child’s appointments running smoothly. All of our health care providers are connected by an electronic medical record and scheduling system.
- Because our program offers a breadth of specialists, patients’ needs can be met within our health system with a coordinated plan of care.
- We will keep your primary care doctor informed of your child’s progress through regular updates. For patients visiting from out of town, we will work closely with your local care teams to manage ongoing care when you return home.
- Resources like a local Ronald McDonald House and our Child and Family Life Services can help you get extra support while making your child’s visit engaging for everyone in the family.
It is important to treat the whole patient, we have found that children with EB benefit from having health care staff who understand their unique needs and who work cooperatively with their families. Our specialists are prepared to address the unique medical needs of EB in areas including:
- Genetic counseling
- General Surgery
- Integrative health and wellbeing
- Palliative & pain management care
- Physical and occupational therapy
- Social work
Bone Marrow Transplant
Bone Marrow Transplant
Bone marrow transplant is a complex medical procedure and is not appropriate for every patient. It is a multi-step process that replaces the blood-making cells in a patient’s body with cells from a donor who does not have the genetic predisposition for epidermolysis bullosa. As the donor cells take up residence in the patient’s bone marrow, they produce cells that are capable of making the missing protein that helps hold the layers of the skin together.
To prepare for a bone marrow transplant, a donor must be identified (related, unrelated matched, or cord blood). Then chemotherapy and low-dose total body irradiation are used to make room for the donor cells in the patient’s bone marrow. This effectively wipes out the patient’s immune system. The transplant itself consists of cells being infused through an IV, much like a blood transfusion. Afterwards, the patient is hospitalized for around 4-6 weeks while the donor cells engraft in the bone marrow and begin producing healthy cells. Once the patient’s cell production has normalized, they are released, but due to their lowered immunity, they need to remain fairly isolated and with 30 minutes of the hospital. Through this recovery period, patients are closely monitored with frequent clinic appointments until 100 days after transplant or their immune system recovers.
Every patient is different and has different needs, and you want to know if this is the right place for your child. Please contact us via phone or email so that we can answer your questions personally.