Jon's Test and Results: The following tests have been throughout the years with extensive testing done in 2001 - 2022.

MRI's (check ascending and descending aorta as well as the head) Echocardiograms (checking heart valves/aorta/blood flow) EKG's Chest X-rays INR - blood thickness/thinness (Coumadin/Warfarin dosage - weekly/monthly Blood Work - blood sugar - kidney- liver- cholesterol - thyroid -sedimentation rate. Pulmonary Test - to check lungs, oxygen rate, etc. Sleep Apnia Test - to check sleep disorder and airway passage. Eye Exams - to test lens movement and condition, retina, glaucoma, etc. Echo 2 -carotid artery-blood flow to neck  CT Scans - check abdominal aorta/arteries (angiogram) Bone Density Scans (check for osteoporosis. osteopenia, etc) Both conditions are far more common and have a much earlier onset than the general population.

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 2024 * 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 symptoms. (temporarily) - 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)   HEALTH UPDATES: -Since 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 14 years. (2011-2025).  For a little over a 7 years now, I have had a bloated abdomen daily.  Several tests have been run with no answers.  I started an aggresive diet I had come up with to try and find some answers and relief in 2021 and it helped somewhat but not to the extent I was hoping for.. - Cellulitis - two hospital stays in 2006 - no problem since changing to an anti-bacterial soap and wearing white socks. (Sounds crazy but it 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. - Had open heart surgery on July 25, 2024 and had multiple complications due to the degeneration of my body from having pseudomonas living in my artificial dacron graft and the accompanying antibiotic ciprofloxacin that was there to keep it at bey even though it was not a friend of connective tisue.  I was in the hospital and then rehab for a total of 7 1/2 months.  Returned home on March 6, 2025.  A very slow recovery I knew I was in for cosidering the length of stay, the placement of a pacemaker, the odyssey of trachs I had during that period (6 in total) and the fact the pseudomonas is still in my body despite removing the aortic graft and valve.  It is now residing in my lungs. INVESTIGATING: - Increased pain in bones and joints - looking for possible relief/solutions - Daily head tightness and pain.  Greatly affects my ability to travel. - Increased dizziness. - Loss of sensation in my feet - Shortness of Breath from minor activity *GOALS FOR 2025 and Beyond 1. Work to have Marfan Syndrome listed in its entirety in the Disability Evaluation Under Social Security Guidelines as a "Multi-System Disorder".  Also, getting the SSA to utilize the NASEM's report in 2022 on Marfan, Loeys-Dietz and Ehlers-Danlos Syndromes that I was involved in and supported. 2. Improving hospital awareness (around the country and world) about Marfan Syndrome, Loeys-Dietz Syndrome and Ehlers-Danlos Syndrome. (as of 12/2024 - 5,200 + hospitals contacted regarding Marfan, LDS and EDS)  3. Help establish, support and promote Marfan, EDS, LDS 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 and the Connective Tissue Coalition. 5. Continuing to initiate, promote and support progressive research that not only the Connective tissue Coalition is doing and a part of, but any research and researchers that has the patient in mind and drives results that can help improve the quality of  our connective tissue families around the world.