I have a genetic condition, Loeys-Dietz Syndrome, which affects the connective tissue throughout the body causing aneurysms, weak joints, and numerous other issues. I recently had to have spinal fusion in my neck, and recovery time is 4 months to a year before I can attempt to return to working. I am attempting to get SSDI and other aid but it has yet to come through, and rent and meds still need to be paid for. I am also being monitored for 2 aneurysms (descending aorta @ 3.3cm, and left subclavian artery root @ 2.2cm) and scoliosis (curviture of the spine) complicated by dural ectasia (widening of the sack around the spinal cord).
Rent currently is $450 a month, I use a lot of OTC meds, and don't have a vehicle or reliable public transportation, so I would estimate monthly expenses at $500.
Due to insurance issues, I also have been left with over $1500 in medical bills from this surgery and $3500 from 2014 when I underwent an aortic valve replacement and graft to correct a 5.6cm aneurysm.
There is also a yearly conference and free clinic for patients with my condition and others like it in August, this year it's at Mayo Clinic in Minnesotta, it's an excellent opportunity to get more information and treatment options and connect with others with this and similar conditions, the cost for transportation, housing, meals, and registration is about $2000. It's the Marfan Foundation Annual Conference. More information on the confernce and related conditions can be found at marfan.org.
Any help would be greatly appreciated and helpful. Thank you and God bless.
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