ALD: Finding the Silver Lining of Memories

The memories we have of growing up should be the type that we look back on and smile about. That is not to say that they all should be happy memories. In fact, that brings all sorts of questions to mind about living in the Matrix and having too perfect of a life. Memories that we can smile about can be the miserably hot day in Disney World, wondering why your dad thought it was a good idea to visit Florida at the end of July. Or it could be remembering all the “character” you built on Saturday afternoons in the autumn raking leaves.

Even memories of the hardest times can have a silver lining. One blogger looks back at one of the hardest times in her life and finds something to smile about, despite her brother’s adrenoleukodystrophy (ALD).

Emily Williams wrote a peice for Vector, Boston Children’s Hospital’s blog. She writes that she was only six years old when her brother Ethan started to lose his vision. After months of tests, including a revolutionary diagnostic test and a CT scan, finally there was a confirmed diagnosis of ALD. Emily and Ethan’s father was a doctor. His knowledge and access to medical journals did little to educate the rest of the family; he could find only two articles.

Adrenoleukodystrophy is a rare neurological disease that damages the protective coating of nerve cells in the brain. Vision, hearing, memory recall, and even behavior can be affected by the disease. It is hereditary in nature and is passed down from mother to son in nearly all cases.
Until recently, there were only two treatment options for ALD. One, Lorenzo’s oil, has been around for a few decades, but it has never been approved by the FDA. The other is stem cell transplantation from an exact match. Advocates for Lorenzo’s oil say that it cures ALD. The stem cells can only slow the progression of the disease.

However, recent advances in science have given people with ALD another option. The new procedure, which has been through clinical trials, is a variation on the stem cell transplant. However, with this procedure, there is no need to find an exact match because the donor and the donee are the same person.

Ethan did not have access to any of these treatments. However, Emily has great memories of her brother. Even though he died when Emily was only seven, she looks back at these difficult times and smiles about the time that she did have with her brother.

Read Emily’s original post by clicking here.

Did you participate in a clinical trial for ALD? What information can you share with the Patient Worthy community?

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