Unlocking The Secrets To Hypermobility – Exclusive Interview With Dr. Marcia Perretto

Dr. Marcia C. Perretto is a Doctor of Physical Therapy, Certified Orthopedic Manual Therapist, with advanced training in movement sciences, Lymphedema, Health Coaching and Nutrition, Yoga Therapy, and Redcord®. She is the founder and CEO of ActifyPT, a highly specialized clinic that focuses on the treatment of those who present with joint hypermobility and Ehlers-Danlos Syndromes and its comorbidities like Dysautonomia, Mast Cell Activation Disorder, and Autonomic dysfunction – Vagus Nerve dysregulation. Dr. Perretto is the co-author of the book Unlocking the Secrets to the Hypermobility Puzzle.

Dr. Marcia Perretto, Actify Physiotherapy and Wellness

Introduce yourself! Please tell us about you and your life, so we can get to know you better.

I am Marcia Perretto, a Doctor of Physical Therapy and a musculoskeletal, EDS, POTS, MCAS expert, and orthopedic specialist. I hold multiple certifications including one in orthopedic manual therapy, health and life coaching, yoga, and Neurac Redcord.

Because of my own journey to health, I have become an expert in patients with Ehlers-Danlos Syndrome (EDS). I am the owner of Actify Physiotherapy & Wellness, a private practice exclusively dedicated not only to those with EDS and joint hypermobility but also to those with complex diagnoses that are often not helped by traditional treatments. My most cherished role is as a mother of one daughter, 20 years old, and we have four cats (don’t ask). We adopted two of them, and the other two just walked into our lives and adopted us! I grew up on a farm (part-time) in Brazil and love to ride horses. I'm a cowgirl at heart and you can often find me at a country concert or learning some new country dance steps.

How did your journey begin?

I was always a bit of a clumsy kid, always hurting, but I thought everyone felt that way. I loved figure skating and running. After many unexplained health events and a long lifetime of symptoms, while finishing my Doctor of Physical Therapy degree, I decided to return to physical activity. To my surprise, my body did not respond as it did a few years back. While out for my run, I started to experience progressive right hip and back pain. For almost 2 years I went from doctor to doctor until I received the final diagnosis. I had sustained a hip labral tear and the only treatment option remaining at that point was hip arthroscopic surgery to correct the problem.

As a hip specialist, I thought my rehabilitation would go smoothly, and I would be back on my feet in no time. However, once again I was surprised when things didn't go that way. The pain progressively got worse, along with many other symptoms like dizziness, heart palpitations, and near syncope (fainting) episodes. The pain was now spreading to other areas of my body, my digestion became terribly slow, and eating became a painful experience. Trying to be strong, I went back to work 2 months after surgery, but things were no longer the same. I knew something was very wrong with me, however, I was continuously being dismissed and bullied by healthcare providers who would frequently tell me that it was all in my head.

I pushed as far as I could until a surgeon recommended that I have my other (left) hip surgically corrected before it became worse. I had it done, but unfortunately, 5 weeks after the second surgery the first (right) hip repair completely failed, and the pain became unbearable. At that time, no surgeon had done two hip arthroscopies on different sides in such a short time, but for me, there was no other option. With the third surgery being performed only 7 weeks after the second one, I was in a wheelchair and unable to walk. The two surgeries so close together caused a cascade of symptoms that at that time I had never heard of. The pain had spread over my entire right thigh and lower back (CRPS – Complex regional pain syndrome). I could barely tolerate or digest any foods and walking was a challenge accompanied by severe pain. I knew I would not be able to return to work.

Tell us about a pivotal moment in your life that brought you to where you are today.

My healthcare team wasn’t sure what was happening, so I was once again referred to a psychologist as they attributed my symptoms to be in my head. It was then that I remembered what my surgeon had said during the very first hip surgery: “Your collagen is so frail, it seems like there is something wrong with it”.

Being on disability allowed me time to try to understand and research exactly what was going on with my body. Since I am a musculoskeletal and hip specialist myself, I had the tools and knowledge to figure out the problem. After several months of research, I narrowed it down to a diagnosis: hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Through trial and error, I started to find out what worked, what didn’t work, and how many other co-existent diagnoses were present along with the original one. With my new knowledge and research, I was able to rehab myself!

What inspired you to start Actify Physiotherapy & Wellness, and what sets your clinic apart from others in the field?

Almost one year after my third surgery I received a call from my surgeon asking me if I would see two of his patients that presented with similar symptoms to mine. In his own words, “I am not sure what you are doing to make yourself better, but I need you to do the same for these girls”.

When I started with these two patients, I didn’t realize that I was actually starting my own private practice and that it would eventually become exclusively dedicated not only to those with EDS, POTS, and hypermobility disorders but also to those with complex diagnoses that traditional treatments wouldn’t help.

How do you ensure personalized treatment plans for each patient, and how do you tailor your services to meet individual needs?

I meet with each new patient for a two-hour head-to-toe, holistic evaluation. After gathering their history and conducting a physical exam including a fully digitized postural assessment to determine how their body is working, I create a specialized “Plan of Care” that includes manual therapy, exercise therapy, nutritional and sleep recommendations, special compression garments to wear, and referrals to specialized physicians as needed. While the rehabilitation process is very slow when it comes to chronic diagnoses and even slower with connective tissue disorders, we have created a plan that will work effectively for those who are willing to put in the time and effort to allow positive changes to happen.

Tell us about your greatest career achievement so far.

I feel like life has groomed me and brought me to exactly where I should be. If I had to choose, I would do it all over again. I wrote a book, Unlocking The Secrets to the Hypermobility Puzzle: An Educational Guide to Understanding How to Live and Exercise with Hypermobility Spectrum Disorders: A Physical Therapist Perspective, to share my knowledge and research with all those who are searching for answers to their hypermobile questions.

Now, on our 10th anniversary, we have just received the Best of Florida 2023 award for Physical Therapy Practices. I feel so honored to have been part of so many success stories. ActifyPt is not a traditional physical therapy clinic, but a place where people come to heal, learn, and become more resilient. I am grateful for having experienced what initially could have been perceived as pain and suffering but was a learning process to help me better understand each person who comes through the ActifyPT doors. My own health experience made me more resilient, a better person, and a better clinician.

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