Laguna Beach family was given the gift of life, now they're giving it to others

Posted: November 12, 2014 at 11:52 am

How donation is done

Stem cell donation: For peripheral bloodstream cell donation, stem cells are filtered from the donor's blood in a nonsurgical outpatient procedure. Donors may experience head or muscle aches that go away shortly after the donation. They are typically back to their normal routine in one to two days.

Marrow donation: This is a surgical, usually outpatient, procedure using anesthesia. Holes are drilled into the patient's spine to get the marrow. Donors may feel soreness in the lower back afterward. Recovery takes two to seven days.

Outcomes: Survival rate for recipients was 69 percent for unrelated donors and 79 percent for related donors in 2010, the most recent year for which figures are available, according to the U.S. Department of Health and Human Services.

Be the Match is a national registry that connects patients with their donor match for a marrow or umbilical cord blood transplant. The registry is looking for diverse donors between age 18 and 44. Information: 800-627-7692 or BeTheMatch.org

Something was killing his wife from within, and Todd Miller had no idea what it was.

He didnt understand why she needed more than 100 blood transfusions. He couldnt fathom why Joselyn, a healthy person who barely got the sniffles, suddenly struggled to lift her arms.

The symptoms started in April 2012, soon after the Millers returned to their Laguna Beach home from the New Orleans Jazz Festival. Joselyn Millers arm and thigh muscles were so tight, she could barely move them.

They saw 10 specialists. No one could figure out what it was.

The second neurologist they saw suspected it was a very rare disease Shulmans syndrome, or eosinophilic fasciitis. According to the National Organization for Rare Disorders, only 300 known cases have ever been recorded in medical literature.

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Laguna Beach family was given the gift of life, now they're giving it to others

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