Chronic Illness and my path to find answers
My Marfan syndrome story
My Marfan’s syndrome and my family’s is why I began looking for the best approach to medicine. I searched west coast to east coat, Hawaii to Cambridge Massachusetts, My story has taken me to the most unique places and adventures looking for the best approach to how we with Marfan’s syndrome overcome. My personal story has been one of pushing the limits of my syndrome but thank goddess for Naturopathic Medicine to bring me back everytime. I’ve stood by and watched family members fight for their lives and I hope to continue to expand how many I can help as my Mom and children are my main motivation.
I grew up in a small Oregon rural community, but if it wasn’t for my ophthalmologist’s intuition and instinct, I wouldn’t have had the life changing referral to OHSU. There I would be seen at Doernbecher where knowledge about Marfan’s was deep. My diagnoses became reality based on Ghent criteria of physical symptoms, and later, my first echocardiogram in my mid-twenties.
I was the girl that was definitely put in the corner (literally my voice was so low and noticeable!) Life starts you off as a misfit with Marfan’s but luckily my humor helped me have friends. Friends didn’t understand why I looked so different with my angular features, big thick glasses, knobby knees and rolled in feet. We definitely can be quite the ugly ducklings us with Marfan’s or just “super extra cute” like any loving mother would say.
My childhood was diificulty especially the growing pains. The major issues concerning my Marfan’s syndrome effects were sports’ injuries and poor eyesight. I was playing basketball one day because, hey we didn’t know a lot back then, and if you’re tall you play ball! So…I played basketball from 5th grade on up. A game in high school as a starter post and as I went to make a layup, I fell down just slightly landing off and BAM!! I threw my whole hip out of joint! This was very, very painful. Imagine being so flexible that you can actually have a joint dislocate as large as your hip, many of you do! For of course with us “loosey-gooseys”, it is very possible. I remember being in so much pain as my father was carrying me off the court as we headed to my first chiropractic appointment. THIS was the beginning of my journey into Alternative Natural Medicine to address my health. Truly a Godsend having the right chiropractors to help when things get bad. Now as an adult a lot of my pain stems from this right sided hip injury that I will continue to deal with the rest of my life, as well as car accidents and snowboarding head/neck injuries. Kids!! Please do as I say not as I did!
I continued to have very poor vision and difficulty keeping up with the intense athletics, so when it came to college, I was banned from playing basketball as I should be. However, while studying at Lesley University, I played for a Boston coed team where I was approached by the WNBA but had to turn down the offer due to Marfan’s and knowing I would never pass the physical! This was devastating knowing I was an athlete inside but knowing I had the body that won’t ever be able to handle it. I wanted to be a snowboarder, a rock climber, a volleyball player. But oh, I still do these things at times. Although, I really need to do more snowshoeing!! My love of speed had to settle within the therapy of music. Music is magic for me to help move through the pain!!
Oh the pain of Marfan’s! I have described it as ten times worse than fibromyalgia to some of my patients and the triggers can be so numerous and varied. Activity and food/nutrients being the main supports I use to keep my pain down. Activity level has to be just right or more pain incurs over the next two days! I decided to do my own research after seeing my doctors’ for support, realizing the treatment options from standard medical care for Marfan’s and its effects on pain. At 19 I became very interested in alternative healthcare and had my first massage. This one massage by my friend MaryLou changed my life and I signed up immediately for massage school. The first time I felt amazing in my own skin, with my first Bodywork session I couldn’t believe how much more effective that was for my pain then any medication I had found. I left my scholarship at my community college to jump into Massage Therapy school. In looking for more long-term general support to adjunct my bodywork, herbs then came into my life and I began an herbal apprenticeship while also studying holistic nutrition.
Thus began my lessons of life for my travels and journeys took me to living off the grid in Maui for months as I tuned into my intuitive voice and the power of nature. This was just the beginning to developing my knowledge and understanding of how nature and healing works, besides playing herbalist witch doctor as a kid! (Thank you Grandma for pretending to eat your dandelion soup!!) In denial that becoming a Naturopathic Physician was my calling, I moved to Cambridge MA to dive into intermodal therapy; an integrative art and music therapy master’s degree. But the universe kicked me off that path and brought me right back home to Oregon to begin my pre Med. I was accepted at the National University of Natural Medicine, the oldest naturopathic school that opened after the original 250 schools were shut down by the newly organized AMA. It was here that I found many answers and so many options for our disease. I was able to do my thesis on naturopathic medicine and its ability to support Marfan syndrome.. Boom I was published and a physician!
That was 10 years ago, and as a clinician I have found more relevancy to what is truly working for us with Marfan’s than I found as a researcher. As a clinician I have the most valuable information on what is working for us along with my colleagues who work with our population for we are still considered rare, (Although I find EDS far more prevalent but having similar needs).
My Marfan story continues with Aortic root enlargements to pre-surgery levels with pregnancies, but has always resolved back down into safe zones after with my medicine. My eyes are getting worse and this week I was told I may need to get my driver’s license modified! So it is time to try another Rx level and referral to ophthalmologist. Our eyes are very delicate and I will share my journey for eye surgery, for it may be around the corner for me.
So My Mission is to help reduce the unneccessary SUFFERING we as Loose Connective Tissues have and for my family and you, my Marfan Tribe! I promise to continue to help share the knowledge of Naturopathic Medicine and what it can do for Marfan’s syndrome and our children.
To begin I’ve put together what Nutrients YOU NEED TO LIve with Marfan’s syndrome or Loose Connective tissues. Which can be found @ Calypsonaturalclinic.com. For more free naturopathic support in my blogs. My blog on Natural Childbirth is controversial, for as a Marfan’s Syndrome patient, I listened to my body and went beyond what is recommended for some Marfan’s patients.
I’ve also started a Facebook group open to all of us with Marfan’s syndrome or other connective tissues disorders ie Ehlers Danlos Syndrome. FACEBOOK
Please follow us on facebook at Calypsonaturalclinic or DrAmandaHoffmanNd