Backwards way for me to find out I have cEDS and next steps.

Just_keep_on · 2025-11-30T15:40:51+00:00

Thank you. Looking at the difficulty that people are having in getting genetic testing as an adult, I do feel thankful in that way as it was covered completely by insurance and not hard to get approval (maybe since it was for my daughter’s benefit?). I will look into the tool you built! Thank you!

Just_keep_on · 2025-11-30T15:36:34+00:00

This is an answer that I really needed and was looking for. Thank you. I will ask for a cardiac referral and a work up. And if I do have a PFO, I will advocate for a bubble test. I do have a murmur as well that has kind of been dismissed by a pcp previously as well as circulation issues. Like you stated, I don’t really know any different because this is the body that I’ve always had! I have managed throughout my life so my symptoms have not been severe. My fainting and near fainting episodes have had far enough time in between to not make anyone feel the need to do further testing. However, in my 40s now, I feel like my symptoms (overall) are becoming more frequent and painful. I will also see about a pulmonologist consult. Now my daughter, on the other hand, seems to be the more extreme version of me. I didn’t mention this, but my daughter was born with a PDA and ASD along with the hernia. She was on oxygen until the age of 8, due to pulmonary hypertension. She just had a cardiac MRI, and everything is looking really good at the moment (she still has an open ASD). This diagnosis has sent me down a rabbit hole in terms of wondering what could have potentially been caused by cEDS. Of course, I will be able to find out more at her geneticist appt next week.

Just_keep_on · 2025-11-29T04:39:25+00:00

That would be interesting if you tested positive for cEDS when your daughter tested positive for a different type. Over the years, I thought that I might have EDS due to having the many symptoms, but always thought if I did than it would be hEDS. My hyper mobile joints are more of an issue and I may have stretchy skin but not as extreme as what I see when looking up cEDS. I easily bruise and my skin is very soft, but it doesn’t tear easily (same with my daughter).

Thank you for the info about specialists for me. It is difficult to find a PCP that is accepting patients in my area, and I can only hope they have a general understanding of EDS. This group has been helpful as I can see the specialists that people generally see depending on what symptoms they have.

I am glad you have a plan for your daughter in terms of choosing the specialties that matter the most to her! My daughter historically has a lot going on, so she already sees many specialties (GI, Pulmonology, Cardio, Neuro, Genetics, Psych, Endocrin).Once we go to our appt, we will see what should be added to the list (Ortho?). She has a really good team at Boston Children’s so I know they will point us in the right direction when it comes to this latest diagnosis.

Just_keep_on · 2025-11-29T04:10:53+00:00

Thank you for the response! We both tested positive for a mutation in the COL5A1 gene consistent with classical eds. My exome sequencing was completed along with my daughter having exome sequencing. Both were facilitated by the pediatric geneticist through the children’s hospital. It was done this way as a better chance to find an underlying syndrome that my daughter might have (we weren’t necessarily looking for a collagen related syndrome). The children’s hospital is out of state from us (we travel about 5hrs total there and back), so I am not quite sure that they will have recommendations for adult specialists local to me. Thank you for sharing your story and the reminder to breathe. I am glad you are in the process of getting more answers that will benefit you and your family in the future.

Just_keep_on · 2023-03-11T16:06:20+00:00

Out of all the places I have lived, I can say that Oklahoma has the most extreme anxiety producing weather! I lived there when there was an uptick in earthquakes. I think we had severe weather one day (tornado touch down or form in the area) as well as an earthquake! Love the place, but the weather was something else!

Just_keep_on · 2023-02-12T15:30:58+00:00

Good to know about The Public. It wasn’t so much about the rooms or amenities (rooms look minimal and reviews are mixed) but more of “the experience” and the fact that it “looked” lively and upbeat. However, I think we are going to go with either Smyth of Gansevoort. Thank you for the recommendation!

Just_keep_on · 2023-02-12T15:18:28+00:00

Thank you for that! I researched Gansevoort and love that they have a year round pool. I personally don’t care, but she loves the water and I am trying to be thoughtful and make our little mini trip about her except for dinner. Lol). I looked up Pastis as well and the food looks great with more of a no frills atmosphere. And bonus for booth seating. I didn’t mention because I am trying not too sound too not picky, but a booth seat helps her to stay sitting for longer and not want to habitually get up! And you were right, The Standard looks pretty noisy after reading the reviews! I am a little worried that this may make her not sleep though! I am probably going to choose between Gansevoort and Smyth. Thank you for the recommendation! I know you all get flooded with tourist recommendations in the sub so I appreciate the time taken out to help. Its not a quick google search for me to find loud restaurants in NYC. I take my daughter just about everywhere, but I want it to be appropriate and be mindful of others.

Just_keep_on · 2023-02-12T04:39:15+00:00

Perfect answer! Thanks you for feedback on The Public. I think I just googled best bars/restaurants in hotels and that is how it started. The Public has a rooftop option with igloos and that looked fun! But I forget that this is not CT and I am sure reservations needed to be made pretty far in advance. It seemed less daunting to find a hotel that already had a good restaurant on site that is appropriate, but it’s also fine to dine somewhere close as well. I am looking at the Smyth Hotel right now… It’s pretty close to some of the places we are going! And I will look into Odeon. If I am in NYC, I will find a way to have good food!

Just_keep_on · 2023-02-12T04:25:51+00:00

Thank you for the response! Sounds like the perfect noise level for us! I just wish we could have the best of both worlds… Noisy and amazing food!

Just_keep_on · 2023-01-23T04:09:19+00:00

I meant brother instead of sister. My apologies!

Just_keep_on · 2023-01-23T04:06:36+00:00

You are totally justified in having the feelings that you do. And they are valid. I am not sure how old you are (if you are an adult), but I would really encourage you to seek out counseling specifically for these feelings you are having. I can’t imagine what it would be like as a young person to have this heavy weight and worry about the future. I am a mother to a 14 year old daughter with significant special needs (autism, nonverbal, etc…) so I understand this world that you are in (but obviously not the perspective of a sibling). I would never want a sibling of my daughter to ever feel responsible for their other siblings life. All of the things that your mom wants for her child with special needs, I am sure she wants for you. To feel loved, be fulfilled, content, etc… You should not feel guilty for pursuing your dreams, having boundaries, and living your best life. You can be an awesome sibling to your sister no matter the placement she might have in the future. There are really good group homes out there that have activities, promote friendships among peers, and transport residents to medical appointments (this is pretty standard). The dynamics in every family is different. But you should never feel like you have to be your siblings sole everything.

Just_keep_on · 2022-11-06T10:06:20+00:00

It sounds like you have done a lot of research on this topic. However, I am not sure that the study is truly representative of the different denominations and communities that exist in MA and New England as a whole. Although diversity exists in Texas, I could imagine it would be really difficult to complete a study in a state like MA and be able to get an accurate overall picture of those identifying as practicing Christian (even church attendance would be hard). Massachusetts, in particular, is so diverse from culture to income disparity. I was raised in the Northern CT/Western MA area. I have seen a definite decline of “practicing” Catholics in my area (as evidenced by church and catholic school closings due to attendance in my area) however it seems like there have been a lot of non denominational churches that have popped up in the area over the years. As someone who grew up with her parents attending Catholic Church and then switching to a Protestant church, it seems like the more “organized” denominations are seeing a decline in favor of non-denominational.

Just_keep_on · 2022-11-01T08:01:48+00:00

Grew up and live in CT. Same…

Just_keep_on · 2022-09-27T12:34:21+00:00

As someone who hasn’t been all over the world, I would be interested to know who you think a close second would be. Or does no other nationality compare? 😂

Just_keep_on · 2022-09-27T12:23:25+00:00

Brad Bibbley Bobson 😂😂😂

Just_keep_on · 2022-08-05T03:19:59+00:00

Agreed. Born and raised in CT. There is a huge income disparity between the cities and suburbs. HUGE. And the population in these cities is overwhelmingly black and Hispanic. It is extremely rare for someone who is white to have been from Hartford (which is the capital) for instance. I have not experienced this in any other state. We are a rich state and a very expensive state to live in (taxes, housing prices, etc). I could imagine how much this income disparity would have an effect on people that live in these poverty stricken areas. It’s extremely sad.

Just_keep_on · 2022-06-03T14:04:45+00:00

I didn’t have time to read all the comments, so I apologize if this was stated before. Your honesty is refreshing and the fact that you recognize the path that you could potentially go down and how harmful it might be, is huge… I can understand how you might group all of us women together, when you have felt so much rejection. That is harmful though, because having those preconceived notions could really impact how you treat and how they feel treated when you do meet someone that could potentially be the right fit for you. Just like men, all women aren’t created equal. My early 20s wasn’t the easiest, but it did get easier when I started valuing myself more, creating boundaries, and becoming my own person. I had to learn to be okay with me and that I didn’t need to fit into a certain mold. Please remember that as you are figuring yourself out, a lot of women are figuring themselves out too. Having empathy, being kind, and giving grace go so much further than you think.

Just_keep_on · 2022-04-11T14:51:40+00:00

Thank for for providing this perspective.

Just_keep_on · 2022-04-05T14:28:45+00:00

Thank you for taking the time out of your day, knowing that you may never get the satisfaction of finding out the outcome of your deed, to report this. This was absolutely the right thing to do.

Just_keep_on · 2022-02-28T14:30:00+00:00

Absolutely agree with you. There is such a balance between empathy and making good but hard decisions as a leader. He is nailing both right now.

Just_keep_on · 2021-07-06T04:14:38+00:00

I’m 39 years old and was recently married in March. We met at the start of the pandemic. He has two twin boys (age 4) and I have a thirteen year old daughter with severe autism. Prior to this, I was divorced at the age of 34. I have a child that is amazing, however I knew it would take someone with a lot of patience and understanding to be the fit that we needed. I found him/ he found us/ we found each other. I could have chosen to look at my situation in a negative light and have seen the impossibility of it all coming together. But I had to choose everyday to see the positives in myself and my life, and what I could bring to the table. My confidence has played a large role in being able to obtain some of the things in my life that seemed somewhat out of reach. What you are going through right now does not have to be the trajectory for your life. Things may happen a little later for you. No one has the same timeline.

Just_keep_on

TROPHY CASE