Dr. AmandaLynn's blog

Naturopathic Medicine is the answer for the healthcare crisis.
~Dr. AmandaLynn

My story as Patient

Chronic Illness and my path to find answers

My Marfan syndrome story. Dr AmandaLynn

My Marfan’s syndrome and my family’s is why I began looking for the best approach to medicine. I’ve searched the west coast, the east coat, Maui, Hi to Cambridge, Ma. in my studies. My story has taken me to the most unique places and adventures. All looking for the answers to my pain and how we with Marfan’s syndrome can overcome. My personal story has been one of pushing the limits of my syndrome. I thank goddess for Naturopathic Medicine to bring me back every time to health. I’ve stood by and watched family members fight for their lives. 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. If it wasn’t for my ophthalmologist’s intuition and instinct, I wouldn’t of had the life changing referral to OHSU. There I would be seen at Doernbecher where knowledge about Marfan’s was deep. My diagnoses was based on Ghent criteria. Later having my first echocardiogram in my mid-twenties sealed the deal. I had a large heart and very elongated valves, all working well.
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. Extremely tall, angular features, big thick glasses, knobby knees and double jointed.. We definitely can be quite the ugly ducklings or just “super extra cute” like any loving mother would say. That turn into models!!

My childhood was difficulty especially the growing pains. The issues with 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 bball from 5th grade on up. A game in high school as a starter post, I went to make a layup, I fell down landing off balance and BAM!! I threw my whole right 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. We headed straight to my first chiropractic appointment. THIS was the beginning of my journey into Alternative Natural Medicine. The right chiropractors to help when things get bad can be instant relief. Now as an adult a lot of my pain stems from this right sided hip injury. I will continue to deal with the rest of my life, as well as car accidents and snowboarding head/neck injuries. Kids with connective issues, Don’t do these sports!!

My very poor vision and keeping up with the intense athletics gave me my hardest challanges. When I came to college, I was banned from playing basketball as I should’ve been. However, while studying at Lesley University, I snuck back in and played for a Boston co-ed team. It was here 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. 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 MD doctors’ for support. When they didn’t really have an answer but this seems to help. The help being so tired you don’t work you heart at all with a beta blocker. Realizing the treatment options with standard medical care was full of side effects. Not to mention addictive as opiates for pain had been the only answer for decades.

I began to forge my OWN path!

Luckily I found my first steps toward true health and healing, massage and weed! THC and CBD, very full spectrum, organic and most likely strong! Rampid in my college towns in Oregon and the best! God i couldn’t do what i’ve done wthout it. 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. 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 to my bodywork, i found herbs. Beyond marijuana, herbs then came into my life and I began an herbal apprenticeship like no other. Columbines and Wizardry herbs in Eugene. Teachers Howie and Steven made you hike out, find, watch identify like a botanist and caretake the ecology well before harvesting. This deep dive into herbs created a personal connection with them. Ithas given me a stronger connection to thier abilities and when to use for whom. This kind of medicine is more feminine, mysterious and personal. This is why it works so much more powerfully.
Thus began my lessons of life not taught in books. 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. I remember many memories with plants like playing herbalist witch as a kid! Thank you Grandma for pretending to eat your dandelion soup and like that scotchbroom perfume! Gross, lol. In questioning that becoming a Naturopathic Physician was my calling, as my vision quest on MAUI. I concluded I wasn’t made to be a doctor.

Then i did the most uptight go for the stars mainstream move. I moved to Cambridge MA for Graduate studies at Lesley University. East coast was fun but, not my cup of tea. I had to prove to myself i could! Studying psychology, music, art and dance I soon realized this was too expensive to be a social worker. Universe kicked me off that path and brought me right back home to Oregon to begin my pre Med. I was then 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. I was published and a physician! Most importantly I had found well researched options. Clinically used for hundreds of years in Europe, Asia, India and African medicine. Knowledge from nature, food, fresh air, water, prayer,, dance, music, herbs which combined all my loves!! I was home. As a supportor of the truth over the popular, I couldn’t wait to help bring this medicine to the people again.

That was 13 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! For you tell me! We are still considered rare. Although I find Ehlers Danlos Syndrome & hypermobile spectrum disorders more prevalent and having similar needs.

My Marfan story continues with Aortic root enlargements to pre-surgery levels with pregnancies. It’s stretched again but has always resolved back down into safe zones with my medicine hope to do it again! This aging thing does make it more work!! 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 surgeon, who will be again unable to help me. Our eyes are very delicate and I will share my journey for eye surgery, for it may be around the corner for me.

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

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Loose Women: A Naturopathic Guide to Connective Tissue Issues

by Dr. AmandaLynn Hoffman, ND

Loose Women is a support guide for all things “not talked” about natural therapies for Marfan Syndrome, Vascular Ehlers Danlos, Ehlers Danlos Syndrome, and Hypermobility Spectrum Disorders. This covers Naturopathic Medicine therapies discussed from balneotherapy, regenerative medicine, nutrition to marijuana. The primary goal of this guide is to expand your knowledge of what is available outside the conventional medical model to lessen your pain, improve your digestion, energy, strength, and overall quality of life. As a rare doctor with a rare disease, Dr. Amanda personally “gets” what it takes to work hard toward staying well as a chronic pain patient. You can find here real and intertwined stories of her journey throughout her life as she finds her own answers to living with a leaky gut syndrome, hormone imbalances, chronic pain, as well as preventing fatal cardiovascular incidents. This offers Naturopathic gems for everyBODY – from good gut health, gentle detoxification, pain to hormone education.

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