Ehlers-Danlos Syndrome May Increase Susceptibility to Infections
People with Ehlers-Danlos Syndrome (EDSers) may have higher risk for infections. Fragile skin and poor healing may lead to skin infections. EDSers often have a lowered immune system, possibly due to chronic stress on multiple body systems or an IgG-3 deficiency.
By JORAWSTRON
People with EDS seem to get more infections than people without EDS, and these infections often have similarities. I’m currently in hospital with yet another skin/wound infection, and want to share some of the things that my team and I have learned over the years, about the type of infections, how to diagnose them, treat them, and how to prevent them from happening in the first place.
Within the last decade or so, there has been significant progress in understanding the truly multi-system nature of the syndrome. In London, Professor Rodney Grahame, who has dedicated the majority of his career to treating people with EDS, has brought together a number of different specialists to try to understand some of the symptoms commonly experienced by his EDS patients. The group started small, but has grown rapidly with the realisation that virtually every organ or body system can be affected by EDS.
I have been lucky enough to have been treated by several of the new specialists with an interest in EDS. Not only have they helped to diagnose some of the conditions that I have as a result of EDS, they’ve also, because of their contact with EDS specialists in other fields, been able to understand some of my ‘random’ symptoms, and have referred me to some of the other EDS specialists for investigation/treatment. These super-specialists tend to work in large tertiary referral centres, and despite the very niche areas of interest (e.g. Urogynaecology specialising in bladder dysfunction in women with EDS), their clinics are bulging at the seams with patients.
One of the newer observations is that many people with EDS get lots of infections, most commonly ear/sinus/chest, bladder/kidney, and skin/wound infections. I am no exception.
Wounds tend to take a long time to heal, and scar badly. These wounds often get infected, delaying healing even further. I have a feeding tube and a Hickman line, both of which go through the skin. I’ve ‘lost’ two feeding tubes and one Hickman line due to skin infections that just wouldn’t go away, despite heavy-duty treatments,
People with EDS often have a lowered immune system. Part of this is probably related to being generally unwell for a long time, but there also seems to be a specific deficiency in IgG-3, which is one of the antibodies that fights infection. This can result in a vulnerability to infection, especially those mentioned above, and especially caused by viruses and certain (gram negative) bacteria. The gastrointestinal problems often associated with EDS can mean that oral antibiotics aren’t absorbed very well, making it even more difficult to treat these frequent infections.
The basic problem in EDS is stretchy collagen (connective tissue), but it’s not just stretchy – it’s also fragile. This means that skin can split open or tear easily. Having a heavy feeding tube pulling against the skin can cause the skin to tear, giving infection a way in. This is especially problematic when the other end of the tube is in the gastrointestinal tract, which is full of bacteria.
One of the things we’ve tried that has made a difference is using smaller tubes. My current feeding tube is just over half the size of a standard tube, and has been so much less troublesome than my previous two tubes.
The other thing that has made a difference is using dressings/tape that don’t tear my skin (or cause an allergic reaction). It can be a long process of trial and error to find the right dressing/tape, but it’s so worth it. Having to stick another harsh dressing over already broken skin is not nice, and broken skin is beautifully ready for infection, especially if it’s kept warm and moist under a dressing!
Finally, arranging my tube and taping it carefully to my skin takes some of the weight off the wound, allowing it to heal, and protecting it from infections.
I’ll be trying all those things, and more (suggestions are always gratefully received, and I’d love to hear of your experiences). I hope to get my new Hickman line this week, after having to have it removed last week, after 5 months of grumbling infection. I hope to keep this new line for at least five years. Third line lucky, right?
Being proactive in treating wounds may help reduce infections in people with Ehlers-Danlos Syndrome.
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Thank you for sharing… Wishing you all the best with much success and good health!
God bless!
This has been my experience with all the above mentioned infections & it’s chronic. The medicines also don’t knock them out & cause dangerous reactions. Finding a medicine that works is an issue.
Definitely slow healing and a lot of permanent damage
Thank you for sharing this information. I’m going to take it to my doctor. I’ve been fighting infections every couple of months for years now and round after round of antibiotics don’t make it go away. Going through this again now the last two months and no relief yet .. just another round of antibiotics.
Thank you for sharing. Would you be willing to share which of the specialists in EDS you have found understanding/helpful? I am in England – I was originally diagnosed with EDS in 2003 by Prof Grahame, and he is the nicest, truly humble & compassionate doctor I have ever seen, he came and shone a light in one of my darkest hours. I understand he is no longer seeing patients (due to coronavirus – I don’t know if he will retire permanently now or not). I had a telehealth consultation with another ‘top’ EDS specialist last week (it sounds like they are from the same group of doctors you mention?), as I needed help, but I did not feel like a person, more like a statistic, yet again. Prof Grahame had a huge gift for teaching you what your symptoms mean. I learned nothing from my consultation last week, EDS was barely even mentioned, I just got fobbed off onto someone else (someone I could not run the risk of seeing, knowing the limitations of my body) – so I’m back to doing my own research as usual. Unless I know a doctor truly is wanting to help, and has an interest in me as a person, I won’t be seeing any more – if a doctor doesn’t really want to help, I wish they wouldn’t give you an appointment – it just proves they’re more interested in your money. The internet is a far safer place to learn more without having to cope with doctors who seem more interested in their careers than their patients. I guess most people with EDS can relate to such experiences.
As far as infections are concerned, my immune system completely overreacts to ‘foreign invaders’. I have had countless bad reactions to medicines – some of which have been near fatal.
Apologies for writing so much ????
Jane, i hope im sending this to you.. I jist got my diagnosis of hEDS in oct 27,2020 after 12 years of no answers. Canada is similar to UK without dr Graham. I have a dr yee and he is amazing! Can we talk somewhere? Id like to share experiences to help you get more help. I have a group on fb you can find me easily to talk. Just dm and remind me 🙂 look “keto for chronic disease management”. Thats what is best for my.l management and heavily salting my food and water 🙂
My dad has been in the hospital for over a year now. What started as a routine colonoscopy. They removed a polyp that created a hole. He became very sick and septic within 24 hrs. We rushed him to the hospital where he has has multiple surgeries. His tissues in his body will not heal. He has a huge hole in his stomach and a fistula that has became large that they now use as one of his feeding tunes. The problem is also now he is down to maybe 100 lbs with a trach and on a ventilator due to pneumonia multiple times. His lungs now have holes that will not heal causing so many infections and have used all the antibiotics they know to use but his kidneys are trying to shut down.They have yet to test him for Ehlers Danlos when we know this I’d what is causing it. We need help and advice on what to do. Thank you to anyone that can help!
Sorry to hear of your father’s struggles with EDS. Where are you located? email me at info@edsawareness.com
Three to four years to see a geneticist in Canada (winnipeg). Daughter waited two years now. Has stretchy skin, joint subluxations etc. asked to go to Calgary at our own expense to see Dr Yee but he won’t see out of province people as genetic tests are province specific funds. She think she often has appendicitis and has been constipated life-long. Wondering if that might rupture like other organs ??
I have hEDS & have been experiencing chronic sinus infection every month for 24 months, covid got in the way for seeing local ent. Sinus surgery was due today and cancelled yesterday. I have been referred for a whole body scan to look for pockets of infection. We are an autoimmune family, ceoliac as the main one. I have been looking into hEDS, fungal infections, mast and auto immune conditions with repeated infection to take back to ent after scans. Any suggestions?
Hi Sarah. My daughter has just been diagnosed with Heds and I am v sure I have it. I have had chronic sinusitis for many years but it has got worse since I had covid 18 months ago and I have recently taken antibiotics (clarithromycin and levofloxacin) for 8 weeks but they start to work and then stop. I am desperate to feel well again. I had sinus surgery in 2012 but it actually made things worse and I would be v cautious about it . This is the first time for me that antibiotics have flat out not worked and yet I can feel there is an infection. I just wonder if even longer is needed because blood flow is poor in eds patients. Please can you let me know if you improve, what you’ve taken or had done and which hospital/ consultant. I am at my wits end and any help would be greatly appreciated.
I have EDV(ascular) as well as normal Ehlers Danlos. I am very susceptible to staph infections on the crown of my head. I am currently nursing staph-related sepsis.
I have heart disease as a result, as well.
Doctors ( unable) to tell me what type of ( illness) That I have — by reading these comments – Lots match my Battle. I would like more information on how to get Answers…. As, This illness is Relentless !-! Thank You All
Doctors have been unable to tell me what ( illness) I have . Lots of the Comments here ( match) my Battle. I would like more information on how/ where to get Answers to my illness. Thank You !-
Jesse, There are over 100 webinars by expert doctors discussing the issues with EDS
@sarah I’ve just had immunology bloods done and have similar background. Pneumococcal Ab came back low and Lab notes indicate follow up testing on what appears to be a determination of severity for Specific Antibody Deficiency.
Notably, this is linked with history of chronic bronchitis, ear infections, sinus infections, pneumonia etc. If you haven’t yet had this done, it is worth having looked into. It seems treatment is either preventative antibiotics or where this isn’t working then some form of IV immunology therapy.
I was looking up if there was a connection when I came across this article. Mine is IgG-2 and this mentions IgG-3, so not the same exact thing but similar in that both are specific antibody deficiencies. Hope this may be of help, though it is quite a bit later!
Hello wanted to know if anyone knew of a specific treatment for my son. He has EDS and has recently been diagnosed with sepsis. He is 28 years old. Sepsis is bad enough much less someone with EDS. Thanks in advance.
Sarah – A similar thing happened to me – chronic sinus infections and covid. My doctor figured out that I have likely had a mycoplasma pneumoniae infection and it was confirmed with a blood test.