A note from Debra

Physical Therapist Haydee Bustos is a Pillar of Strength in the Duchenne Community

Posted on February 22, 2017 4:12 pm

 

Haydee Bustos has a passion for helping kids, and through her experience as a physical therapist, she discovered an even deeper desire to help kids with Duchenne muscular dystrophy.

A fatal genetic disease, Duchenne muscular dystrophy causes muscle deterioration leaving patients, mostly boys, wheelchair bound by their mid-teens and claims their lives by their mid-20s. There are currently only two FDA-approved pharmaceutical treatments and one that is indicated only for a limited number of Duchenne patients.  Physical therapy is the only known non-pharmaceutical treatment to positively impact all patients.

Haydee Bustos has been a physical therapist for 15 years and worked exclusively with children for the last 11. Presently she works as a PT consultant with California Children’s Services Los Angeles County within the Department of Public Health, a program which provides physical and occupational therapy services for children and young adults with medically-eligible conditions such as Duchenne. Haydee travels to different medical therapy units located in some schools around the county finding inspiration in helping children progress in each session.

“My patients thrive when they accomplish goals, and I create a goal for every therapy session so that children feel accomplished and find value on each therapy sessions,“ explains Haydee. “This helps promote confidence and increases motivation — two virtues that kids in physical therapy really need.”

As she’s traveled to schools, Haydee has encountered more Duchenne patients than most physical therapists. After working with these patients and their families, Haydee felt she needed to better understand the disease and its physical issues. In fact her desire was so strong she chose to focus her Doctorate thesis on Duchenne muscular dystrophy. Haydee completed a Doctorate program at Rocky Mountain University of Health Professionals.  For her thesis, she gathered current available assessment tools and outcome measures used for children with DMD in order to monitor changes in their functional skills. To go one step further, Haydee searched for a certification program so the families in her community would see her expertise as “certified knowledge.”

Haydee was drawn to the CureDuchenne Cares Physical Therapist Certification program as a professional way to supplement her education. Developed by Jennifer Wallace, founder of the Duchenne Therapy Network, the CureDuchenne Cares Physical Therapist Certification program works in conjunction with CureDuchenne, a national nonprofit dedicated to finding a cure for Duchenne. The physical therapy, educational, and outreach program focuses on the most current standards of care, shared best practices, and the skills necessary to navigate the healthcare system.

In addition to taking the day-long continuing education course with physical and occupational therapy colleagues, Haydee took her interest to the next level by choosing to study current research articles on the topic of Duchenne and successfully taking an examination to be deemed a “CureDuchenne Cares Certified Physical Therapist”.

“I see incredible value in a certification, and so do my patients and their families,” explains Haydee. “It’s a validation of your knowledge and an opportunity to help inspire others to get certified and to expand their proficiency in the physical therapy field.”

In addition to learning about the best options for Duchenne physical therapy treatment, Haydee was also educated on the most current and vital information about Duchenne genetics, research for treatments and clinical trials. This information rounded out Haydee’s knowledge base, giving her a comprehensive understanding of the best ways to treat Duchenne and an in-depth understanding of the specific struggles and needs of the Duchenne community.

Haydee, a true ally for those with Duchenne, now connects better than ever with Duchenne patients and their families by building mutual trust through education and awareness.

“Before this certification course, my understanding about Duchenne was primarily therapy-based and I wasn’t comfortable discussing Duchenne specific clinical case studies and trials with the families,” admits Haydee. “Having this up-to-date knowledge is a great starting point and has helped me open up dialogue and trust between my patients and their families.”

As soon as the mother of one of Haydee’s Duchenne patients learned that she was a CureDuchenne Cares Certified Physical Therapist, her whole attitude changed toward Haydee, her legitimacy, and the type of therapy she provides. The program helped Haydee gain the confidence and trust of a family in an incredibly challenging situation. For these Duchenne families, Haydee has become a pillar of strength, inspiration, and accountability.

“I want to open the minds and hearts of all therapists,” describes Haydee. “I want to tell them not to get discouraged because you need to have that passion to really learn and make a difference for the Duchenne community.”

 

If you are a physical therapist and are interested in learning more about the CureDuchenne Cares Physical Therapy certification program and its benefits, click here.

Are you looking for a physical therapist who is specially trained to care for your loved one with Duchenne? Check out the listings of CureDuchenne Cares Certified PTs across the nation here.

 

 

An Open Letter to the Duchenne Community

Posted on February 13, 201710:39 pm

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An Open Letter to the Duchenne Community

Posted on 6:59 pm

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