Hello @smbryce1, thank you for your responses. Yes, let's connect, whether professionally or as a friend. I am part of a movement called the Rare Advocacy Movement and we have a platform where we connect and discuss living with rare diseases if that suits your interests! I don't have social media but I am open to keeping in touch!

I am going to Jacksonville Mayo Clinic because it is closest to me. I know I have PFO and other congenital abnormalities including Medullary Sponge Kidney disease and Mild Hydrocephalus with Absence Septum Pellucidum and I didn't find any of this out until I got an equivocal Lyme Disease titer after a bite in 2015. I've had joint pain since I was 8 and I have had shoulder and hip dislocations on and off since I was about 15. I am going to be 30 next summer. I have ribs that pop out of place constantly and put pain in my chest and back. I can't walk without doing weird things to pop my hips and ischium area several times per day. I go WAY PAST hard end feel when it comes to my elbows and they pop very loudly 3 times at once when I extend them daily. I have to pop my chest and shoulders in several places or I get stuck in positions daily. I'm going into this phase of stiffness that I didn't use to have so often. My hands hurt so bad it hurts to hold my steering wheel and I have a padded cover with places for my hands. I just ache and ache and ache.

As for VEDS, I don't know for sure if my son and mother have it. I am certain they are hypermobile though. You can see through all of our skin as well. I will upload some photos of my son.

**What makes me think I have VEDS?*** Well, I knew nothing of EDS until I went to Mayo Clinic after seeing 7 neurosurgeons for my neck pain. The PA Neurologist noticed I was hypermobile and sent me to the EDS Clinic. While waiting for the clinic appt I had plenty of time to research. I found the criteria for hEDS and HSD and thought that sounds just like me! If I had my mom or son evaluated, I would have met all 3 criteria for hEDS but in part B I did not because I didn't have that testing done on my family yet so The EDS Clinic in Jacksonville Dr. Knight, left it as HSD until my appt on Jan 19 where we discuss the "confirmatory" DNA results from the test he ordered from Invitae.

Now...I had a DNA test that was done prior to this that said I have an Autosomal Dominant Variant of Ehlers Danlos Syndrome - Type 4 that my child is 100% likely to inherit and I am an affected carrier. But I couldn't log into the dang test at the EDS Clinic appt so I opted for their DNA test for $250. Of course, 1 day later I was able to log in to my data again..... (pics attached)

I am just going based on my Family History of dying early and our continuous vascular complications, chronic pain (especially thoracic, hands, neck, spine, joints, hips) + my Raw DNA data uploaded to GenoMapp showing EDS-4. Mayo used Invitae to do my DNA testing and they said they found benign variants on that exact marker I gave them but I submitted evidence from Clinvar Database that it's linked to pathogenic and they are going to be having their analyst team look deeper.

**Do I have allergies?** YES. In recent years, in 2019, my body decided suddenly it was allergic to some of my favorite things, coffee, chocolate, eggs, wheat, yeast, corn, and lots of medications. I think it may be MCAS but I have still to do my 24/hr urine analysis for it. My IgE has been in the 660s before and recently it was in the 270s. Almost all of my labs are always normal. I have had a history of High CRP and Sed Rates though. Same with my son.

I am looking for hope for sure. Living like this, with an almost invisible illness, contradicting answers, and the inability to have ever had a normal life is taking a toll on me. It's honestly miserable to be alive and I have so much ambition and big goals and every time I get started, I end up stuck again from the illness or injures from it, which literally stops me in my tracks. (pic attached of what it can be like on bad days)

I'm sick and tired of being sick and tired. I also want to get answers for my family. My mom is concerned because she is at the same age her brother died and she just had a stroke. My son is ALWAYS in pain and I feel so bad because he's only 8. We both had dislocations in a car accident 3 years ago and I feel like we just haven't recovered. My neck continues to slip further in my sleep (at rest!) and I have yet to have any doctor advise me on what to do next time it happens. It leaves me completely immobilized and this last time I couldn't get out of bed for 3 weeks, when I finally did, my legs decided not to work and I'm still struggling on and off with that and it's been over 3 months.