LETTER- Doc too jocular on Huntingtons
As a physician treating patients with Huntington's disease (HD), I wanted to respond to Dr. Hong's July 7 column: "Wasteful inheritance: Huntington's disease devastates everyone." While I support efforts to increase awareness and understanding of this tragic illness, I take exception to the flippant tone of much of the column.
The first paragraph in particular trivializes the issue of genetic risk through its poorly chosen play on the word "inheritance." Those dealing with Huntington's disease on a daily basis deserve better.
Huntington's disease remains a rare condition (estimates of the total number of people affected world-wide range from 350,000 to 490,000– considerably less than the 2-4.7 million new cases per year cited). I encourage those readers who are interested in learning more about HD to visit the Huntington's Disease Society of America (HDSA) website at www.hdsa.org. Additional perspectives can be found in recent interviews with gene-positive individuals such as NBC correspondent Charles Sabine and others who have chosen to share their stories to increase awareness of HD and support for research into effective treatments. There is an intensive research effort underway world-wide investigating drugs both to treat symptoms and to slow down the disease or delay symptom onset. Information on current clinical trials is available through the Huntington's Study Group at www.huntington-study-group.org as well as at www.clinicaltrials.gov.
The HDSA supports a network of Centers of Excellence for the care of patients and families living with Huntington's disease, including the HD Program at the University of Virginia which offers a monthly clinic with a team of specialists in neurology, neuropsychology, social work, genetic counseling, physical, occupational and speech therapy. In a separate clinic, counseling and evaluation are offered to those living at risk for HD.
The HDSA also holds an annual meeting for patients and families living with HD. This year's meeting took place recently in Raleigh, NC and was attended by hundreds of individuals affected in some way by HD. I invite Dr. Hong to attend a future meeting and to witness the tremendous resilience and courage that we see every month in those we care for with HD and their families.
Madaline B. Harrison
UVA Health System Neurology Department
The letter bears the names of 12 other medical professionals including the Department chair–editor.