Ehlers-Danlos Syndrome

Question: I have just been diagnosed with Ehlers-Danlos syndrome (joint cartilage) should i stop playing sport? Diagnoses is Ehlers-Danlos Syndrome of thecartilage joint. I am worried although i have played sport most of my life i recently suffered from a dislocated jaw whilst playing soccer which lead to my diagnoses. Is it worth the risk? Are there any other suffers that enjoy sport? And can i make playing sport safer?

Answer: The classification you give - of the cartilage joint - is confusing. Were you give a type, such as hypermobility or classical? If your symptoms are primarily joint related, you might want to consult with a physical therapist to make sure your joints are strong. The PT would also be able to give you exercises to maintain the strength you currently have. I have played sports my entire life and have EDS, so it is possible. I have to brace my weaker joints and limit both the level of hard physical contact and the amount of time I spend running. Your situation will be different, so pay close attention to any aches or pains - no matter how minor - make changes your body says are necessary and find a doctor or therapist who is willing to work with you so you can stay active.

Question: Is Ehlers Danlos syndrome associated with Sarcoidosis? I would like to know if the two could be associated/related with eachother. Please and Thank You!

Answer: Not that I am aware of ... it is usually considered on the differential diagnosis of a specific subtype of EDS

Question: I am 18 years old and I have Ehlers Danlos Syndrome,What do I need to know to keep my self healthy? I need to know what I need to do in order to keep myself healthy. I know exeriseing is one thing. I have a swimming pool so I was going to try swimming,But what else do I need to do? What is good for me to eat do etc. I need all the advise i can get!

Answer: Ehlers Danlos Syndrome will depend greatly on what classification (type) you have been given. Sounds like yours may be a "type 4," or "vascular." Usually there are support groups or information on this disease. You're likely seeing a specialist for this kind of matter, so let he/she guide you as to what you SHOULD or SHOULD NOT do. Best of luck!

Question: I have Ehlers-Danlos Syndrome. Which medicines should i talk to my doctor about, for my pain? Sometimes the pain in my joints is severe. I sometimes hurt so bad, i can not move. I have to find something appropriate to manage my pain. Any help would be appreciated.

Answer: I think it would be a good idea to ask your doctor which meds to consider rather than discuss ones not recommended to you by the medical professional who diagnoses you

Question: Ehlers Danlos Syndrome and Heart transplants? My brother was just told he needs a heart transplant! He is 45 years old and is very very week currently His heart ejection fraction rate is at 15% was 30% 3 months ago and at 65% one year ago. He also has Ehlers Danlos syndrome, connective tissue disorder. He was told if it was not for his pacemaker and difibulator he would not be alive! Trust me we are all scared to death. What I need to know is he a candidate for such a serious surgery considering he has Ehlers Danlos Syndrome. Please let me know what you know.

Answer: I have Ehlers-Danlos Syndrome, and I think he does need the surgery. There are alot types of EDS; one is heart related. What type of EDS does he have? There are issues with skin and surgery with EDS, just let the docs know he has than. And what is his problem with his heart? I also have a daughter with Congenital Heart Defects and has had two open heart surgerys and still needs one more this spring. I think that if the doctors are saying he needs it I would get it. They don't throw that word around lightly (transplant). And his ejection fraction rate is very low. It is scary and I have been thru alot since my daughter was born. Try to keep positive and pray! Miracles do happen! My daughter is one of them. I will be praying for him and you.

Question: I need to know what type of syndrome this is, cause its not exactly ehlers-danlos syndrome? I have very elastic skin, hyper-extensive joints, and stretching, but I can't dislocate my joints easily at all, and I can stretch beyond what most people can/ my skin collagen is very high, so I have very tough/strong skin but very elastic, and I don't bruise easily at all, so its like EDS but without the negatives so I dont know what I have?

Answer: You are just lucky? Ehlers-Danlos symptoms vary quite a bit, so you could just have a different subtype or expression. Be careful not to injure yourself.

Question: Ehlers-Danlos syndrome, he has it, i don't, whats the odds my baby will have it? I am 29 weeks pregnant, i didn't know at the time, but the jerk i was seeking that "knocked me up" had ehlers-danlos syndrome. I am now wandering if my daughter will be effected???

Answer: You picked him! You had unprotected sex with him! Deal with it. Ask your doctor or Google it.

Question: Necessary precautions/lifestyle changes do i/employers need to make with Ehlers Danlos Syndrome and Arthritis? I have been told i have got Ehlers danlos Syndrome, (Kyphoscoliosis) a, serious connective tissue disorder, that is likely to leave me crippled, soon ish (Doctors words) aswell as Arthritis. It affects all my major joints, my entire spine, neck, both hips, knees and pain in toes. I'm a 21yr old F, just graduated. Want to work with kids. What necessary precautions can and employers need to make, or changes should i make to my life. Is there anything i can take/do for the pain. (I don't want pain killers, i really feel thats not the way to beat pain.) Does bracing help, if so what? What braces do i get for my knees, for my back, etc, etc? Please only answer if you can help and are serious, i don't want silly answers, this is serious, i am young and i want to live as happy a life as possible, working with and for other people. Thanks xxx

Answer: I do not have what you have but I face the same bleak future. I live everyday in constant pain but like you do not want to take pain medications that prevent me from doing what I like to do. I am faced with a future in a wheelchair also but I live my life to its fullest because who knows when I will be in a wheelchair and if I live my life focused on the bleakness of the situation then I am not having a quality of life so live life to its fullest and when it happens deal with it but don't let months or years pass you by waiting for the worst. I keep in my mind that one day I will be in a wheelchair so I chose to seek college and a career in something I can do in a wheelchair and so can you. I have a brace to support my body however there are good and bad to braces if you wear them the decrease the muscles you already have but if you don't wear them then you lose the extra support. At this point in my life I wear the brace when I need it but rarely is that the case. Pain medications I take the minimal amount because I want to live a quality of life(I also have a pain specialist to assist me with my pain you need to get one they understand your pain allot better and are better educated to help with you pain) I have one life to live so I am going to live it the best I can and so should you

Question: Does anyone know the difference between Ehlers-Danlos syndrome and Hypermobility? And is exercise harmful to the joints and muscle or does it help? Recently diagnosed but my doctors don't know which one I should be classified as

Answer: Benign Hypermobility Syndrome is one of the names of Hypermobility Syndrome. Other names are double jointed or loose joints or hyperlaxivity. It is called benign in difference to the malign types like some of the Ehlers- Danlos syndromes with a lot of problems with internal organs and in difference to Marfansydrom, which people unrecognized often die off between 20 and 40 years old by an Aorta rupture. These people have a Hypermobility Syndrome too, but it is not called benign. So benign means that you normally gets as old as the average of people withoutbenign hypermobility syndrome.

Question: I have Ehlers-Danlos Syndrome. Can I get a tattoo? I have a condition called Ehlers-Danlos Syndrome. I have the hypermobile type primarily (joint dislocation) but I have experienced some of the Classic Type (Skin tearing, scar's stretching and paper thin skin). My skin does rip off with a band-aid. I use a Fentanyl patch to deliver pain medication through my skin & I've noticed when I remove it; it takes the skin with it (I have a covering to help keep my patch on & it adds to the surface area that's ripped off). I would like a tattoo, a small one, but I worry about this because I do bleed easily & I scar & bruise heavily. When I have bloodwork - it always bursts my veins (which is common whether needles are stuck in the veins or I bump something & they burst to make a nasty bruise). But I do fine with accupuncture (I love it in fact). Any thoughts on what I should do besides using permanent marker? :). Pain isn't an issue, I had some cavaties in my teeth & never felt them or the dentist scraping in them w/a pick due to my pain meds. Just a note, where I place my Fentanyl patch and where I plan to have the tattoo are entirely seperate places - my concern is all the problems I come into with EDS (easy bleeding, heavy scaring & bruising) and how it'll affect the look of the tattoo or should I just not bother and enjoy other people's tattoo from afar?

Answer: I see pain isn't your concern, but I am not sure if a tattoo is the best idea for you. They take a good couple of weeks to heal. They heal from the inside out, like a burn. I would deffinately talk to your doctor first before you meet with an artist. You would want your tattoo to heal properly so you can enjoy it, so just doublecheck with your doctor to make sure it's ok!

Question: Is it possible to have symptoms from several different types of ehlers-danlos syndrome? Is it possible for someone with CLASSICAL EHLERS-DANLOS SYNDROME to present most or all of the symptoms from the following types. ARTHROCHALSIA, KYPHOSICOLIS, HYPERMOBILITY, DERMATOSPARAXIS, AND TENASCIA-X DEFICIENT.

Answer: Ehlers-Danlos syndrome is a group of rare genetic disorders affecting humans and domestic animals caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. There is no known cure. Treatment is supportive.(Wikipedia) Ehlers-Danlos syndrome is a hereditary collagen disorder characterized by articular hypermobility, dermal hyperelasticity, and widespread tissue fragility. Diagnosis is clinical. Treatment is supportive.(Merck) Please see the web pages for more details on Ehlers-Danlos syndrome.

Question: Who is aware of Ehlers Danlos Syndrome? This is a connective tissue disorder.There are different types of EDS. Vascular Ehlers Danlos Syndrome is the most severe type, resulting in early death. Many people have EDS and are never diagnosed. A skin biopsy is the way to test for EDS.May was Ehlers Danlos Awareness Month, yet the majority of people have never heard of this disorder. Tests, information and links are available.

Answer: I'm a doctor. I'm aware of Ehlers Danlos Syndrome (EDS). It's due to abnormalities in collagen. You say that "many people have EDS". The overall frequency of the condition in the UK is 1/150,000. The symptoms of the EDS type 1 can be pretty serious and if you have it you'll probably know. Other EDS types are milder and more difficult to diagnose. It's good that there is a EDS awareness month, but as with most diseases that are relatively rare, publicity is poor unless there is someone famous to promote it.

Question: Ehlers danlos syndrome and piercings? I'm wondering if anyone who has ehlers-danlos syndrome also has problems with piercings. I don't want or need a copy and pasted answer from ednf or wikipedia, as I know enough about my disorder, but I'm wondering, from other personal experiences, if there have been problems for other people. I find that my piercings never completely heal. That and they get infected every now and then, even just my ear lobe piercings. I've got my nostril, inverse navel, rook, and 4 on my lobes. All get infected routinely and it's pretty annoying. I've never known anyone else with this problem so I'm guessing it could be the EDS. If anyone has any insight to this, let me know. And please, NO copy and pasted answers unless it is directly related to the problem and not about the disease in itself. Thanks.

Answer: Same with me. I have one piercing in each ear. They get infected occasionally, and never fully heal. When I put my earrings in, I sometimes accidentally poke another hole, which then gets infected and red (I am assuming because of thin skin). Hope this helps. (I have "unofficially" been diagnosed with EDS)

Question: Are there any adults with EDS? (Ehlers danlos Syndrome)? ? How old were you when you were diagnosed, how are you today? I have a toddler with a possible type of EDS, awaiting diagnosis. Thank you.

Answer: this is the wikipedia link with details of this disease http://en.wikipedia.org/wiki/Ehlers-Danl… ,but sure u can have it as an adult. well read the symptoms in the link and go to the doc immediately to see if he is ok.

Question: Ehlers Danlos syndrome and pregnancy? My husband and I have been off birth control for several years and I still havn't gotten pregnant, we havn't gotten obsessive but the clock is ticking. My physical therapist wants me to get genetic counciling because she thinks that I have Ehlers Danlos Syndrome.Are my periods heavy, I don't know. Am I 26 and have had surgery on both thumbs? Yes. Dream lost?

Answer: Women with EDS can still have children, but there's a risk of passing it on, which is why genetic counseling is recommended. Before worrying, though, you should first see whether or not you have this.

Question: Ehlers Danlos Syndrome and tattoos? I have a rare joint condition called Ehlers Danlos Syndrome http://www.medicinenet.com/ehlers-danlos… my condition causes poor healing and things along this line. I am turning 18 next month and really want to get a tattoo but I am not sure of the complications with EDS. If anyone knows anything about EDS and tattoos could you please give me some pointers and suggestions about things I can expect when getting a tattoo and if it is a good idea or not for people who have Ehlers Danlos. Thanks so much!

Answer: You should be fine. Tattooing doesn't do that much damage.