MARFAN RELATED RESULTS:
* Pulmonary and Sleep Apnia test show - severe sleep apnea and severe upper airway restriction in left nostril/sinus..
* Eye Test - cataracts in both eyes-left eye cataract removed November 2013, right eye removed
in Feb 2014.
JON'S MEDICAL FINDINGS THROUGH December
* MRI on lower back -- dural and tarlov cysts found
Have been seen by a cardiologist with Marfans experience.
* Have been seen by a rheumatologist
with knowledge of Marfans. Diagnosed with Fibromyalgia, Osteoarthritis, Costochondritis, Raynaud Syndrome and More.
* Awarded Social Security Disability in May 2002.
* Upper GI with
small bowel follow thru - found bacterial overgrowth in small bowel which was treated with anti-botics and improved gastric
- Kidney Stones - one ER event - future possibility due to existence of more stones.
- Tarlov Cysts/Dural E Cysts - large cyst between spine and sacrum
- Atrial Fibrillation/Atrial Flutter
- (see below)
2012, had severe a-fib, 3 ER visits/stays-including 5 cardio-versions-an ablation in March 2013 to correct a-fib and another
in 2014 (on opposite side of heart). As of the Fall of 2017, I was put on amiodarone which stopped the a-fib but unfortunately
elevated my fatigue.
- Stomach/Digestive problems have been more of a problem in the last 10 years. (2011-2021).
For a little over a 2 years now, I have had a bloated abdomen daily. Several tests have been run with no answers.
I will be starting an aggresive diet I have come up with to try and find some answers and relief in 2021.
- two hospital stays in 2006 - no problem since changing to an anti-bacterial soap and wearing white socks. (Sounds crazy
butit has worked.) Unfortunately had another attack in July 2019-resolved with anti-biotics.
- Increased pain in bones
and joints (More severe as I am aging.) My bones in my hands are actually fusing together. (tested in 2017)
- Diagnosed with Costochondritis
in December 2010.
- Increased pain in bones and joints - looking for possible relief/solutions
- Daily head tightness and pain. Greatly
affects my ability to travel.
- Increased dizziness.
*GOALS FOR 2021 and Beyond
Work to have Marfan Syndrome listed in its entirety in the Disability Evaluation Under Social Security Guidelines as a "Multi-System
2. Improving hospital awareness (around the country and world) about Marfan Syndrome, Loeys-Dietz
Syndrome and Ehlers-Danlos Syndrome. (as of 12/20 - 5,200 + hospitals contacted regarding Marfan, LDS and EDS)
3. Promote our MARFAN & RELATED DISORDER CLINICS at CHILDREN'S HOSPITAL and BRIGHAM & WOMENS HOSPITAL Help establish, support and promote EDS and Related Disorder Clinics throughout the U.S. and World.
4. Continue raising awareness of Marfans, Loeys-Dietz, Ehlers-Danlos and Related Disorders in the medical
community with our Physician Awareness Committee(s) and other initiatives through my EDS and CTD NE/MA group.