Ehlers Danlos Treatment Options
Donation protected
Despite Joint Hypermobility itself (one of the visible red flags of EDS) and many other symptoms I started to show as a toddler, and continue to while growing up, (like bruises that won't go away and that would come on their own without any injury), dystonia (both during day or night), and chronic pain (though, as a kid, only in some of my joints, and not nearly as agonizing as it has been for the past 5 years, the past two years especially been the worst of it, so far. My life with chronic pain started at 10, with my knees and I was then diagnosed after an ultrasound and an evaluation with Osgood Schlatter, which you can learn more about in update 5. It affects 4% of the population and it is thought to be one of the musculoskeletal signs of EDS, it is listed as one of them), my EDS was only diagnosed this past year and, like for the majority of us (way too many people) I was diagnosed with all its secondary/associated conditions, complications, and symptoms way before I was diagnosed with EDS itself. My diagnosis weren't wrong, they were just very much incomplete.
(In my updates as well as in my comments you’ll find pictures of my Dr’s papers, my diagnosis, some estimates, a bit more details about my surgery in Maryland as well as awareness, I’ll be here to clear any doubts you might have)
My main condition is EDS (Ehlers Danlos Syndrome), a genetic multisystemic illness. It is a defect in connective tissue, and that’s why it is multisystemic and affects every system in our bodies, connective tissue is to be found in 90% of our body, from our brain all the way to our feet. It is the material that held us together, the glue that connects our internal organs, veins, blood vessels, muscles, tendons, ligaments, and joints, which is why they are all affected. Imagine that my collagene (produced by connective tissue) is actually faulty, like chewing gum or slime rather than stable. This is why we end up with a series of comorbidities (conditions or even diseases manifesting themselves at the same time). Each EDSer is unique and affected differently. Not all houses builded with a weak material have the same exact issues, nor are them identical. So, comorbidities occur as a result to the consequences of a primary illness, in this case, EDS.
Personally, my diagnosed comorbidities, (see photos in comments as well as updates), are Multiple Chemical Sensitivity, severe Fibromyalgia (defined as severe by neurologists, pain management and rheumatologist, picture is to be found in update 6), Chronic fatigue, severe IBS, neuropathy, spasms, dystonia, adrenal insufficiency which oxigen could help for (it could also help w/ a few of my other issues, oxigen can have many benefits. It can help cope with chronic pain, chronic intense fatigue, migraines (so my neuralgia as well, check the comment sections for more)), gastroparesis/gi dismotility (which is only presumed as we can’t use the tests to diagnose in my delicate & complex case, as my body can’t handle it for a whole bunch of reasons), GERD (I would say it is pretty severe, I’ve been dealing with it for the past 6+ years & that’s definitely my 24/7 symptoms as well as pain, I take 6+ different meds for my stomach every day, you have all my actual meds at the end of this post just to have an idea.), atypical face neuralgia, &, finally, last but definitely not least : CRPS aka Complex Regional Pain Syndrome, which, just like the other ones, is a comorbidity that can occour in EDS patients. We think that occourred as a result of a whole mix of things: my craniofacial went through many traumas; for about 6 years I couldn’t afford to treat my TMJD, (then I started to, and, not too long after that I had to “quit” again) , and suffered great pain as well as many issues with chewing, my jaw is hypermobile just like the rest of my joints, I also have limited opening, severe muscles spasms, vertigo, auditory processing issues (my jaw dislocates & subluxes many time a day & my condyles touch my eardrums while it does that, and my massetere and temporalis are out order and don’t work “enough” to chew or swallow properly. That’s how far we went due to not having the possibility to do something about it, no splint (I’ve been given an estimate for a splint to be found in update 6) , no tmjd PT, I did a few cold laser session (3 years into this pain) but sadly those do not have any long term effect &, altought they can definitely lower the pain & help you manage, you have to be really consisted with the use of it and cold laser sessions here in Florence (To professor Longo) have a cost of €250 each. He owns over 200 types of lasers and uses combinations of it.
I haven’t been able to work for over two years, and I’m not getting any disability income, I never have. The maximum I could ever get is €257 euros per month, but the application process itself requires money, on top of months and months of waiting between each stage. Money wise, I'm fully dependent on my family and I'm thankful for the support, but, sadly, they are really struggling, considering they had to pay so so much through the years. Despite all of this, I have dreams and projects that keep me fighting and I’m a very positive and hopeful person. I’m asking for help to try to give myself my own best chance in life. One day, if I get my health stable enough, I’d really love (as I’m a geek) to complete my studies online, the only viable option in this body due to my health and all it comes with it: pain, fatigue, symptoms, having to be close to a restroom at all times. As of right now, I’m not even able to study online, but the idea of it keeps me going and I know, one day, even if in years, I will. There’s just so much to take care before that. I’m mostly bedbound due to my health, when I’m not at the hospital. Most people, just like myself, don’t have insurance here as we are fortunate enough to have the option of public health. Sadly, public does not mean free. The only services that are completely free are surgeries (because you have a long waiting list). You pay appointments (and the price is “nothing” compared to private health, but that nothing becomes something if you have more specialists that you can count). You have to pay for physical theraphy, medications (full price), etc. And it adds up once you take that many medications per day. I receive iron infusions as my body is unable to metabolize it through my stomach. But, as with everything else with public health, there are waiting periods between a cycle and another, and I have had 3 fainting episode in between. I need iron patches in between, they ship from the US and are very expensive.
I lived in England for four years but had to come back, this was before my US surgery. During those years I fought so hard to keep myself there, I was working but with loads of difficulties and I changed so many jobs in an effort to find one that could go with my needs and what my body was asking for. My rock bottom was living in a room that was literally falling apart, I couldn't afford a better or proper place as I counted every cent, every week, and a lot of that was going to PT treatments, medicines and specialists.
This was taken in London, in the house I mentioned, on my 20th birthday, over four years ago. I was off work as I just had my gallbladder removed (4 days before).
What the money will be used for:
-trips to Milan to see a Dr that studies EDS, Dr Bassotti. I mentioned other Drs in my previous updates. But, eventually, through online EDSers groups, I was told that this Dr tends to follow up with patients and care for them post diagnosis, on top of having a team of specialists.
-PT in water. Water exercises with a physical therapist are not even being close to the strenght my body needs to built. But I need to pick this back up again. If you want to learn about the importance of PT in EDS & why eds patients need to be in PT for their whole lives you can check update 12 or, even better, watch the EDS society’s conferences on youtube or learn about eds on their website. #EDSSociety
-Jaw splint: estimate on update 3 €690
-medicines+iron patches+appointments fees+Oxigen theraphy
I have these two lists of chronic illness items on amazon. The reason I have two and messy ones, both on Amazon Italy & Amazon US, is because some items don’t ship in one or the other. I get a notification right away. In case something is been bought on one list that happens to have a doppelganger (or in any way similar item) on the other, I’ll cancel the “extra” item from the other list (not the one it has been bought on). I also made it this way to make it more simple and accessible to everybody as some of my friends don’t speak Italian & some others don’t speak English.
http://www.amazon.com/registry/wishlist/1VC7FK3NWAIMJ
http://www.amazon.it/registry/wishlist/1QNYWKE75VT2Y
One more example would definitely be cold laser, which I first tried for chronic pain on my TM joints, both, before and after my TMD surgery. I felt a good amount of pain decreasing at the time, but I aslo had to interrupt because I couldn't afford it. You can check more in depth update 7&8 to see what specific effects cold laser had on me both pre and post and see what my surgeon suggested in details in his letter.
Cold laser is only available privately and we have a physician in my hometown (luckily I won't need to travel) who is an expert on Laser Therapy and constantly travels the world to speak at conferences. Cold Laser doesn't only help with chronic pain itself, it will help me with my muscle spasms, numbness and tingling in my limbs, as well as with neuralgia and thus all neauralgia related symptoms. You can check his website here and learn about Cold Laser use in medicine. http://www.longolaser.it/ you can also read everything he has published in here. http://www.longolaser.it/pubblicazioni
Thank you so much to anyone that will donate as well to anyone that will just take the time to read and share. I truly appreciate everything and anything, including just shares. If you made it this far, thank you so much for reading and listening today. Feel free contact me for any doubt you might have. If you have idea on how I could raise funds also while giving back to this amazing community of spoonies, feel free to contact me.
Any help, even just sharing this page is so very much appreciated and means the world to me.
Thank you all! x
Vane
An example of how long public health can make you wait: (full photo in comments)
In case you are interested to learn about EDS yourself :
https://www.ehlers-danlos.com/
http://claude.hamonet.free.fr/eng/eds_hypermobility-beighton-poster-ghent.htm
http://claude.hamonet.free.fr/eng/art_eds-pains.htm
http://claude.hamonet.free.fr/eng/home.htm
http://patients.ambrygen.com/general-genetics/know-the-basics/genetics-101/inherited-vs-genetic
http://pediaa.com/difference-between-genetic-and-hereditary-diseases/
https://www.google.it/search?
source=hp&q=difference+between+genetic+disease+and+inherited+disease&oq=difference+between+genetic+disease&gs_l=psy-ab.3.0.0l2j0i22i30k1l8.34936.43741.0.45848.35.33.0.0.0.0.507.4818.0j6j7j4j1j1.19.0.dummy_maps_web_fallback...0...1.1.64.psy-ab..16.19.4798.0...0.6abST8rjWLY
https://www.google.it/search?q=dystonia+in+eds+patients&oq=dystonia+in+eds+patients&gs_l=psy-ab.3...43155.53188.0.54213.25.25.0.0.0.0.505.3259.0j5j4j3j0j1.14.0.dummy_maps_web_fallback...0...1.1.64.psy-ab..11.12.2939.0..0j46j0i46k1j0i67k1j0i22i30k1j33i160k1j33i21k1.174.uWqCE2xEPbw
https://www.edhs.info/about1-cs05
Bureaucracy, guidelines, treatment protocols
https://www.facebook.com/EhlersDanlosSardegna/
https://www.farmagalenica.it/wp-content/uploads/2017/08/CannabisFlosProtocolloPaziente-TUTTE-FORME-FARMACEUTICHE-1.pdf
http://www.ondaosservatorio.it/ondauploads/2017/07/CARTABELLOTTA.pdf
https://www.google.it/search?q=protocollo+trattamento+ehlers+danlos&oq=protocollo+trattamento+ehlers+&gs_l=psy-ab.3.0.33i160k1l2.19083.30969.0.32501.46.32.0.0.0.0.227.3933.0j26j1.27.0....0...1.1.64.psy-ab..22.23.3210...0j33i21k1j0i19k1j0i22i30k1j0i22i30i19k1j0i13i30i19k1.0.VDqH1riwF6M <- treatment protocol for EDS in Italy- still not defined.
https://www.ehlers-danlos.com/2017-eds-international-classification/
PS : question for anyone who also has EDS. At age 10 I was diagnosed with Osgood Schlatter following an ultrasound and physical evaluations. Oscgood Schlatter is inflammation of the patellar ligament at the itbial tuberosity. It affects about 4% of the population, kids that usually grow out of it as your body start to fully develop. My chronic pain story started at 9 (and thus changed a lot since then->chronic->doesn’t stay the same through time) and I recently learned that Osgood Schlatter is one of the muscoloskeletal signg of EDS. I would like to know if anyone reading who has EDS was also diagnosed with Osgood Schlatter as a kid, and if you would like to share your own experiences and insight about that. So that I can better learn how EDS and Osgood Schlatter are connected in this sense, given the rarity of both, given that Osgood Schlatter affects only 4% of the population and there is definitely a loat that we don’t know about it. Medicine misses the connection between the two. If it didn’t maybe some eds patients affected by Osgood Schlatter could be diagnosed with eds earlier, as it is thought to be a sign of eds. Medicine also still misses the link with rheumatic conditions and connective tissue diseases, as well as the compromised immune system that might come with it.
(In my updates as well as in my comments you’ll find pictures of my Dr’s papers, my diagnosis, some estimates, a bit more details about my surgery in Maryland as well as awareness, I’ll be here to clear any doubts you might have)
My main condition is EDS (Ehlers Danlos Syndrome), a genetic multisystemic illness. It is a defect in connective tissue, and that’s why it is multisystemic and affects every system in our bodies, connective tissue is to be found in 90% of our body, from our brain all the way to our feet. It is the material that held us together, the glue that connects our internal organs, veins, blood vessels, muscles, tendons, ligaments, and joints, which is why they are all affected. Imagine that my collagene (produced by connective tissue) is actually faulty, like chewing gum or slime rather than stable. This is why we end up with a series of comorbidities (conditions or even diseases manifesting themselves at the same time). Each EDSer is unique and affected differently. Not all houses builded with a weak material have the same exact issues, nor are them identical. So, comorbidities occur as a result to the consequences of a primary illness, in this case, EDS.
Personally, my diagnosed comorbidities, (see photos in comments as well as updates), are Multiple Chemical Sensitivity, severe Fibromyalgia (defined as severe by neurologists, pain management and rheumatologist, picture is to be found in update 6), Chronic fatigue, severe IBS, neuropathy, spasms, dystonia, adrenal insufficiency which oxigen could help for (it could also help w/ a few of my other issues, oxigen can have many benefits. It can help cope with chronic pain, chronic intense fatigue, migraines (so my neuralgia as well, check the comment sections for more)), gastroparesis/gi dismotility (which is only presumed as we can’t use the tests to diagnose in my delicate & complex case, as my body can’t handle it for a whole bunch of reasons), GERD (I would say it is pretty severe, I’ve been dealing with it for the past 6+ years & that’s definitely my 24/7 symptoms as well as pain, I take 6+ different meds for my stomach every day, you have all my actual meds at the end of this post just to have an idea.), atypical face neuralgia, &, finally, last but definitely not least : CRPS aka Complex Regional Pain Syndrome, which, just like the other ones, is a comorbidity that can occour in EDS patients. We think that occourred as a result of a whole mix of things: my craniofacial went through many traumas; for about 6 years I couldn’t afford to treat my TMJD, (then I started to, and, not too long after that I had to “quit” again) , and suffered great pain as well as many issues with chewing, my jaw is hypermobile just like the rest of my joints, I also have limited opening, severe muscles spasms, vertigo, auditory processing issues (my jaw dislocates & subluxes many time a day & my condyles touch my eardrums while it does that, and my massetere and temporalis are out order and don’t work “enough” to chew or swallow properly. That’s how far we went due to not having the possibility to do something about it, no splint (I’ve been given an estimate for a splint to be found in update 6) , no tmjd PT, I did a few cold laser session (3 years into this pain) but sadly those do not have any long term effect &, altought they can definitely lower the pain & help you manage, you have to be really consisted with the use of it and cold laser sessions here in Florence (To professor Longo) have a cost of €250 each. He owns over 200 types of lasers and uses combinations of it.
I haven’t been able to work for over two years, and I’m not getting any disability income, I never have. The maximum I could ever get is €257 euros per month, but the application process itself requires money, on top of months and months of waiting between each stage. Money wise, I'm fully dependent on my family and I'm thankful for the support, but, sadly, they are really struggling, considering they had to pay so so much through the years. Despite all of this, I have dreams and projects that keep me fighting and I’m a very positive and hopeful person. I’m asking for help to try to give myself my own best chance in life. One day, if I get my health stable enough, I’d really love (as I’m a geek) to complete my studies online, the only viable option in this body due to my health and all it comes with it: pain, fatigue, symptoms, having to be close to a restroom at all times. As of right now, I’m not even able to study online, but the idea of it keeps me going and I know, one day, even if in years, I will. There’s just so much to take care before that. I’m mostly bedbound due to my health, when I’m not at the hospital. Most people, just like myself, don’t have insurance here as we are fortunate enough to have the option of public health. Sadly, public does not mean free. The only services that are completely free are surgeries (because you have a long waiting list). You pay appointments (and the price is “nothing” compared to private health, but that nothing becomes something if you have more specialists that you can count). You have to pay for physical theraphy, medications (full price), etc. And it adds up once you take that many medications per day. I receive iron infusions as my body is unable to metabolize it through my stomach. But, as with everything else with public health, there are waiting periods between a cycle and another, and I have had 3 fainting episode in between. I need iron patches in between, they ship from the US and are very expensive.
I lived in England for four years but had to come back, this was before my US surgery. During those years I fought so hard to keep myself there, I was working but with loads of difficulties and I changed so many jobs in an effort to find one that could go with my needs and what my body was asking for. My rock bottom was living in a room that was literally falling apart, I couldn't afford a better or proper place as I counted every cent, every week, and a lot of that was going to PT treatments, medicines and specialists.
This was taken in London, in the house I mentioned, on my 20th birthday, over four years ago. I was off work as I just had my gallbladder removed (4 days before).
What the money will be used for:
-trips to Milan to see a Dr that studies EDS, Dr Bassotti. I mentioned other Drs in my previous updates. But, eventually, through online EDSers groups, I was told that this Dr tends to follow up with patients and care for them post diagnosis, on top of having a team of specialists.
-PT in water. Water exercises with a physical therapist are not even being close to the strenght my body needs to built. But I need to pick this back up again. If you want to learn about the importance of PT in EDS & why eds patients need to be in PT for their whole lives you can check update 12 or, even better, watch the EDS society’s conferences on youtube or learn about eds on their website. #EDSSociety
-Jaw splint: estimate on update 3 €690
-medicines+iron patches+appointments fees+Oxigen theraphy
I have these two lists of chronic illness items on amazon. The reason I have two and messy ones, both on Amazon Italy & Amazon US, is because some items don’t ship in one or the other. I get a notification right away. In case something is been bought on one list that happens to have a doppelganger (or in any way similar item) on the other, I’ll cancel the “extra” item from the other list (not the one it has been bought on). I also made it this way to make it more simple and accessible to everybody as some of my friends don’t speak Italian & some others don’t speak English.
http://www.amazon.com/registry/wishlist/1VC7FK3NWAIMJ
http://www.amazon.it/registry/wishlist/1QNYWKE75VT2Y
One more example would definitely be cold laser, which I first tried for chronic pain on my TM joints, both, before and after my TMD surgery. I felt a good amount of pain decreasing at the time, but I aslo had to interrupt because I couldn't afford it. You can check more in depth update 7&8 to see what specific effects cold laser had on me both pre and post and see what my surgeon suggested in details in his letter.
Cold laser is only available privately and we have a physician in my hometown (luckily I won't need to travel) who is an expert on Laser Therapy and constantly travels the world to speak at conferences. Cold Laser doesn't only help with chronic pain itself, it will help me with my muscle spasms, numbness and tingling in my limbs, as well as with neuralgia and thus all neauralgia related symptoms. You can check his website here and learn about Cold Laser use in medicine. http://www.longolaser.it/ you can also read everything he has published in here. http://www.longolaser.it/pubblicazioni
Thank you so much to anyone that will donate as well to anyone that will just take the time to read and share. I truly appreciate everything and anything, including just shares. If you made it this far, thank you so much for reading and listening today. Feel free contact me for any doubt you might have. If you have idea on how I could raise funds also while giving back to this amazing community of spoonies, feel free to contact me.
Any help, even just sharing this page is so very much appreciated and means the world to me.
Thank you all! x
Vane
An example of how long public health can make you wait: (full photo in comments)
In case you are interested to learn about EDS yourself :
https://www.ehlers-danlos.com/
http://claude.hamonet.free.fr/eng/eds_hypermobility-beighton-poster-ghent.htm
http://claude.hamonet.free.fr/eng/art_eds-pains.htm
http://claude.hamonet.free.fr/eng/home.htm
http://patients.ambrygen.com/general-genetics/know-the-basics/genetics-101/inherited-vs-genetic
http://pediaa.com/difference-between-genetic-and-hereditary-diseases/
https://www.google.it/search?
source=hp&q=difference+between+genetic+disease+and+inherited+disease&oq=difference+between+genetic+disease&gs_l=psy-ab.3.0.0l2j0i22i30k1l8.34936.43741.0.45848.35.33.0.0.0.0.507.4818.0j6j7j4j1j1.19.0.dummy_maps_web_fallback...0...1.1.64.psy-ab..16.19.4798.0...0.6abST8rjWLY
https://www.google.it/search?q=dystonia+in+eds+patients&oq=dystonia+in+eds+patients&gs_l=psy-ab.3...43155.53188.0.54213.25.25.0.0.0.0.505.3259.0j5j4j3j0j1.14.0.dummy_maps_web_fallback...0...1.1.64.psy-ab..11.12.2939.0..0j46j0i46k1j0i67k1j0i22i30k1j33i160k1j33i21k1.174.uWqCE2xEPbw
https://www.edhs.info/about1-cs05
Bureaucracy, guidelines, treatment protocols
https://www.facebook.com/EhlersDanlosSardegna/
https://www.farmagalenica.it/wp-content/uploads/2017/08/CannabisFlosProtocolloPaziente-TUTTE-FORME-FARMACEUTICHE-1.pdf
http://www.ondaosservatorio.it/ondauploads/2017/07/CARTABELLOTTA.pdf
https://www.google.it/search?q=protocollo+trattamento+ehlers+danlos&oq=protocollo+trattamento+ehlers+&gs_l=psy-ab.3.0.33i160k1l2.19083.30969.0.32501.46.32.0.0.0.0.227.3933.0j26j1.27.0....0...1.1.64.psy-ab..22.23.3210...0j33i21k1j0i19k1j0i22i30k1j0i22i30i19k1j0i13i30i19k1.0.VDqH1riwF6M <- treatment protocol for EDS in Italy- still not defined.
https://www.ehlers-danlos.com/2017-eds-international-classification/
PS : question for anyone who also has EDS. At age 10 I was diagnosed with Osgood Schlatter following an ultrasound and physical evaluations. Oscgood Schlatter is inflammation of the patellar ligament at the itbial tuberosity. It affects about 4% of the population, kids that usually grow out of it as your body start to fully develop. My chronic pain story started at 9 (and thus changed a lot since then->chronic->doesn’t stay the same through time) and I recently learned that Osgood Schlatter is one of the muscoloskeletal signg of EDS. I would like to know if anyone reading who has EDS was also diagnosed with Osgood Schlatter as a kid, and if you would like to share your own experiences and insight about that. So that I can better learn how EDS and Osgood Schlatter are connected in this sense, given the rarity of both, given that Osgood Schlatter affects only 4% of the population and there is definitely a loat that we don’t know about it. Medicine misses the connection between the two. If it didn’t maybe some eds patients affected by Osgood Schlatter could be diagnosed with eds earlier, as it is thought to be a sign of eds. Medicine also still misses the link with rheumatic conditions and connective tissue diseases, as well as the compromised immune system that might come with it.
Organizer
Vanessa Tanini
Organizer
Florence, Metropolitan City of Florence
