I was super dare I say excited and almost happy that I may have figured everything ...I am sad. There are no drugs that target the connective tissue abnormality. It’s unlikely there would be one cure for all 13 subtypes since different types affect different genes and work through different mechanisms. If there may be a way to help my daughter and others live better, happier lives without pain, I am in!EDS research is so very necessary. Increase your water and salt intake because the extra sodium chloride boosts the amount of blood cells your body produces, which in turn increases your blood pressure. My weight gain has been more from anti-depressant use over the years, but as I have gotten older, the weight doesn't fall off like it used to. You may be prescribed medications like beta blockers to reduce your heart rate, among others. Examples of treatments that have helped others include low-impact exercise, mobility assistance devices, pain management and diet changes.To cure EDS, scientists would have to alter the genes responsible for the condition. They are equipped to determine what tests you need to find out what your genes say about the subtype of EDS you have as well as provide additional information for your family about conditions like EDS that are inherited.Neurologists — most commonly associated with treating brain-related conditions — specialize in your entire nervous system. A doctor can help determine what will be right for your symptoms.It’s worth noting that some influencers in the health space may advocate for eating or drinking collagen supplements.Making changes to your diet helps some people with EDS, especially for those who have food allergies or sensitivities.
I recently got married and I also recently got diagnosed with hEDS. In general, the risk of complications when you have EDS following surgery is higher than average, so plan carefully with your doctor before, during and after surgery if it’s the right option for you.Part of living with EDS is taking precautionary measures to prevent worsening symptoms. A geneticist might provide a diagnosis and suggest management strategies for your other doctors, while your pain specialist manages your chronic joint pain. A CBT approach helps you cope with chronic pain and reframe what it means to live with a chronic condition. You may even consider a medical bracelet. Gene editing is still an evolving technology and isn’t ready for study in EDS patients. I also have heartburn, but that it controlled by medication and the IC diet. Always having a glass of water before each … Too many of our young people are suffering to and unable to live full lives.I have hEDS and hope research like this will someday help myself and others like me. Your doctor may choose a number of different drugs. Some of these include sleep disturbance, fatigue, postural orthostatic tachycardia, functional gastrointestinal disorders, dysautonomia, anxiety, and depression. After that I tackled dinner. I was diagnosed a year and a half ago with hEDS at age 30 (despite lifelong symptoms, and severe ...Help! Talk to your doctor first here too as it’s not an FDA-approved treatment for EDS. Considering having EDS means you’re more likely to have a digestive tract issue, you may be referred to a gastroenterologist.Hematologists specialize in blood and blood-related issues. Get your information on file with local emergency rooms just in case, including a list of your treatment team’s contact information.Just because you have EDS doesn’t mean you can’t have a successful pregnancy.Take special precautions if you have the vascular subtype of EDS and see a maternal-fetal specialist who has managed others with your condition. In September I was at 162. It cuts out acid, spices, alcohol, caffeine, etc. I ...I was just wondering if anyone else has trouble with large weight swings? It focuses on developing your strengths and reducing stress and tension, which has been shown to be a major cause in the headaches that can sometimes accompany EDS.To help stabilize your joints, a variety of mobility aids can make a big difference. For example, surgeons can firm up or stabilize your joints through a process called arthrodesis by fusing together nearby joints or adding a metal structure to the area.
It can manifest as numbness, tingling, burning, itching and decreased sensation in your hands, feet or face.At least 30 percent of patients with EDS also have small fiber neuropathy and it’s tricky to treat.Avoiding triggers — allergens found in food and poisonous animals like bees and some medications, sudden temperature changes or strong smells — sometimes prevents an attack. Diet wise I find the idea of "adding" to my diet to be the most helpful. This intervention has the potential to improve quality of life of patients with hEDS, through simple, inexpensive but effective dietary measures, while reducing treatment costs.Please help us make this research possible by donating now.Diet restrictions allow me to function with my hEDS, but are still very challenging. I have constant dislocation of shoulders and hips...I ...Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders,New paper questioning the 2017 nosology for hEDS,recent hEDS diagnosis - extreme pain - history of opioid use - help :(.Long term effects of college soccer and hEDS?hEDS questions, in the process of trying to get a diagnosis,Dr. If I needed second helpings I would add more lean meat and or more vegetables. This will be different for everyone depending on your subtype, and it’s something you’ll want to address with your doctor.