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EDS Alert Newsletter 
Hi,
In a patient with vascular EDS who has a collapsed lung, is it possible that when the lung is reinflated, the lung itself, not the chest tube, can actually hit an artery or something and cause the artery to rupture?
Is there another way to treat a collapsed lung in a patient with Vascular EDS? Thanks,
Dan
Sorry, I don’t know the answer to your questions Dan. While a tube could certainly cause damage, it could be damaged in other ways as well. There are multiple ways to treat a collapsed lung (aka spontaneous pneumothorax) – needle aspiration, angio catheters, and of course chest tubes. I’m currently treating an EDS patient with a “pigtail catheter” as a chest tube and looking for the best way to continue treating them. So if people have any good evidence based recommendations (or have experience) I’d loved to hear them. Thanks ~Aaron
Hi Dan,
I gather you have EDS? I am looking for other EDS patients who have experienced pneumothorax. I have Type 3.
Jennifer Bunn
I was diagnosed with ehlers- danlos syndrome type 1 yesterday. It was kind of a relief because it was possible I had marfans, which could lead to severe heart problems. I recently had a pnuemothorax and was in hospital for a week. This is when everyone started thinking oh maybe there’s another problem.
Anyway I have been trying to find what physical limitations I have because the doctor said I can’t dive or bungee jump and a few other things because my aorta was weaker and I couldn’t deal with the pressure change, I was wondering if anybody knew anymore?
Thanks
To those looking for more information about lung issues in EDS patients (or who are looking for other patients with lung issues), we always suggest the national foundations as an excellent starting point. In the US, the Ehlers-Danlos National Foundation and in the UK there is the Hypermoblity Organization. Links to both organizations can be found in the column to the right.
Hi I have not been diagnosed with EDS yet. When I was 8yrs old I had my first pnuemothorax the second at 9. I haven’t gone a day in my life without a blackand blue mark or subluxation of one of my joints. I have flat feet thin very fragile skin, you can trace all my veins. Thin corneas, bleeding gums and the list goes on. I am the first in my 57yrs to think maybe it might be EDS. Does anyone else see the pattern?
I went to see one of the foremost geneticists in the world on Friday and was shocked to find out that I have inherited two different forms of EDS — classical from my father and vascular from my mother. Then, this morning I found out that my brother’s daughter’s daughter, who is one and a half, suffered a collapsed lung and the doctors don’t know why. I explained to my mom that it might be part of vascular EDS, but she doesn’t want me telling the others in the family what I have learned. Prior to this, I was diagnosed with classical EDS with features of vascular. Family members have been beyond rude and unsupportive and don’t want to hear anything about even the classical form. Any suggestions?
If this child is in your direct line then the parents need to know the possibility of this syndrome being the cause. I’m sorry, I don’t agree with your mother on this. EDS is a hereditary syndrome and therefore this child could possibly have it and needs to be raised knowing she has it so she can take the proper precautions to protect herself from injuries that have the potential to be very serious as you know from your own childhood. I am 50 and in the process now of being tested for this. I have 2 children, daughter 29, son 21 and they both show signs of it as well which is why I have insisted on being tested. I have 95% of the symptoms yet my daughter has the most physical problems. Talk to the mother of the baby, most mothers will take the information you give them and use it to protect their child. Print out what you can and give that to her along with something from your own doctor that validates you having this (if you don’t mind sharing some info on your own health like that). Good luck and my prayers go out to this baby.
hi my name is robin im 21yrs old and five weeks ago i had a collapsed lung. when i went into the E.R the doctors were frantic asking do u have marfans? two days ago i went to a arthritis specialist he said that i do have the right symptoms of Marfans but it might in fact be EDS. just a little bit of good news/ bad news off my bad. as of right now i am waiting for the genetics testing to come back. hoping that it is not type 4. i was just wondering if any of u have been diagnosis of Sub clavian steel or vascular outlet syndrome. its one of the other problems i have going on right now and i want to know if its connected at all. like when i thought that my scoliosis and pectus excavatus might have been a boarder line reason for the chest pains and my collapsed lung