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Bardet Biedl Syndrome Family Association

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

February 2014 Newsletter: A Visit to the BBS Center of Excellence

By: Gerry & Mary Morris

Our family traveled to the Marshfield Clinic for the first Bardet Biedl Syndrome (BBS) Center of Excellence appointments July 10-13, 2013. We live in Phoenix, Arizona and have had issues finding quality health care for our two daughters, Ashley, 20 and Carly, 12 both affected with BBS.

Visiting the BBS Center of Excellence has changed our ideas in defining what really great care is! For example, all the providers and specialists at the Marshfield Clinic were very knowledgeable about BBS. This is
something that has honestly NEVER happened in the 20 years we have been dealing with this syndrome. The Marshfield Clinic medical staff was not only knowledgeable, but was able to discuss research they had
reviewed and how that related to our daughters’ specific needs across the three days of various medical appointments. We witnessed daily, medical staff communicating effectively with us and each other prior to our visit to ensure our girls had the best care possible. For instance, we saw Dr. Stuart Waltonen for psychological testing in the morning and during our appointment with Dr. Hema Murali that afternoon, she mentioned that Dr. Waltenen had noticed something about our daughter Carly that concerned him. Dr. Murali was able to tailor her care of our daughter based on the observations of another specialist in an unrelated field only hours before. This high-level of caring and communication across specialists is unheard of with our health care at
home.

We are especially thankful for Dr. Robert Haws. He listened to our pleas and cared enough to make a difference in not just my daughters’ lives, but in the lives of every person with BBS that traveled to the Marshfield
Clinic. Dr. Haws is an outstanding medical professional that has historically provided exceptional care to our girls. He actually diagnosed Ashley with BBS when she was just a toddler, and cared for her since her birth in 1993. When she was in need of a kidney transplant, we relocated our family to Phoenix, Arizona to allow Ashley to have the best care possible before, during and post-transplant under Dr. Haws. Coming to the Marshfield Clinic, to the Center of Excellence for BBS, is a trip we plan to take yearly because we want the best quality of care for our daughters.

Dr. Haws and the Center of Excellence is clearly the best care possible for those living with BBS. Dr. Haws has also shown great support for the Bardet Biedl Syndrome Family Association (BBSFA) here in the United States for several years. He has traveled to the BBSFA Family Conference to speak about kidney function in BBS and has answered countless questions and calmed many fearful parents on our BBS family chat group. He has become a BBS “subject matter expert” and has shown tremendous dedication to a syndrome that is virtually unknown in our country today. In the past, families with BBS who wanted specific treatment by physicians knowledgeable in BBS had to travel to the Great Ormond Street Hospital for Children in London, England. This was of course not something that most families living in the United States could typically afford. Thankfully, we now have a dynamic, cutting edge Center of Excellence of our own at the Marshfield Clinic that rivals any of the clinics in London, England and can be a beacon of hope for both BBS patients and their families living in the United States.