Ehlers Danlos Syndrome Care Plan For School: Fill & Download for Free

Because intelligence is an asset.If you lament the social impairments that often come with high intellect, you are lamenting the poor social skills that are strongly correlated with your intelligence, not your intelligence itself.You can correct this problem using your intellect by carefully studying psychology, with a particular focus on healthy human interaction.If you lament the dizzying array of thoughts and details that can flood your mind, you are lamenting your inability to focus, not your intellect.Meditation, mindfulness in particular, can train your mind to dismiss extraneous details and come to coherent, salient data more easily.If you lament how inappropriately the gifted can be educated, you are lamenting institutional red tape and the limitations of a system meant to serve the majority.You can solve this problem by raising funding for schools, allowing them to implement more and better gifted programs.If you lament how poorly the intelligent are treated by others, you lament bigotry and hatred.Bigots, well, I don’t know how to deal with bigots. It’s a hard problem, but it’s not caused by your intelligence, but their ignorance and fear. Your intellect is not the real problem.Meanwhile, with a high intellect, even problems that break others can be overcome.I had emotionally and socially crippling Post-Traumatic Stress and social anxiety. I couldn’t even have internet conversations without having a panic attack!How did I learn to mitigate enough of the symptoms to function in the world (most of the time)?My intellect. I studied the problem until I arrived at a solution, and I systematically implemented that solution.It took years, but it worked.I had physically crippling Ehlers-Danlos Syndrome. I would fall down multiple times per day. How did I solve it?My intellect. I studied chronic pain until I arrived at a diagnosis that fit all of my symptoms perfectly, derived a treatment plan based upon that information, and improved substantially without any external help. Falling became rare.It took a few months to build up strength and learn to prevent the injuries that caused that level of dysfunction, but I could do it. I could do it without help and with great efficacy.Your intellect, like mine, is a gift. Stop conflating your intelligence with the negative things that correlate with it, and milk that gift for all it can offer.It's better than feeling bad about your strengths.

Apologies, this is a long one.I’m white, middle class, university educated, and have an amazingly supportive family who have attended appointments with me, sought answers and, most importantly, believed me. If I had these problems acquiring appropriate diagnoses, I despair for all of those who are left ignored and forgotten, being told they are lazy and/or mentally ill.I have never been totally healthy and normal, but never had any meaningful luck with doctors because blood results came back normal and I superficially looked fine (mostly).As a child my mum was often taking me to doctors, trying to get answers and help for my pain, sudden episodes of pallor and my fatigue.At work, I wondered how people got through their working lives because I struggled just getting through the months, weeks, days, hours and sometimes minutes. I cried pretty well daily and had no social life as there was nothing left in me after the work day. I stopped working and had children, which was a new level of nightmarishness. I couldn’t fully look after my own babies, I was so broken. Of course, I was just depressed, right? I initially thought so but slowly learned I only felt depressed when I was trying to do too much and slept too poorly. Eventually I decided depression wasn’t the cause, it was a reaction and not the primary problem. But doctors disagreed. Many times. There was nothing on offer but antidepressants which made me feel far worse even after titrating up per medical instructions. I tried about ten different antidepressants before I outright refused any more.However, they knew I really had scoliosis. Then I was finally officially diagnosed with Chronic Fatigue (which I had identified with for years), then Narcolepsy (after 20+ years of complaining about sleep issues; I only got a referral when my mother in law told me about the epworth sleep scale and I brought in my completed score and we acquired a proper sleep test). Sleep medication for narcolepsy got rid of my depression and my numerous acute bacterial infections that were almost constantly plaguing me and keeping me sick in bed.Then, informally by the GP with no meaningful testing aside from a poor man’s tilt test, came Postural Orthostatic Tachycardia, and another form of dysautonomia called gastroparesis, where your stomach fails to empty in a timely manner.The treatment for the POTS was “drink lots of water and eat lots of salt. Just have a bag of chippies!” The treatment for the chronic fatigue was that I just had to exercise more. Every day. No matter how bad I felt. That’s like expecting someone to exercise when they’ve got a full on influenza infection. It’s not beneficial. But I kept trying because they were the experts.I experienced lots of pain but it was never the primarily problem so it wasn’t really worth bringing up. Besides, I’d just get the typical spiel of using ice and heat packs, and taking over the counter pain relief.Though my scoliosis should not have been progressing, it was discovered it was (so THAT’S why my head felt like it was always on an angle! It was!), and I soon had a thoracic spinal fusion to straighten out the three curves in my back from the scoliosis. I got a suspected (by me, and the GP by my description and her observation of the symptoms) spinal fluid leak and the worst gastroparesis of my life but was disbelieved about both by the surgeon, who, incidentally, had noticed my hypermobile back and had got an unusual near 100% correction. I understand that doesn’t often happen for people with mature skeletal systems.Recovery from the surgery didn’t go well. Many symptoms were greatly exacerbated. By this point I was having trouble standing. I couldn’t walk much, and was mostly bed-bound and almost completely house-bound. My dreams lay shattered. I began to think voluntary euthanasia was my only way out as I was a burden on my family. But there was still a modicum of hope and a drive to understand what was happening.I spent most of my time researching medical things trying to understand what was going on and how I could get better.A genetic condition called Ehlers Danlos Syndrome kept popping up. That can’t be what I have, I thought. I’m not that flexible and I don’t dislocate like these people do!Quite coincidentally, a friend of mine, who I only met completely randomly when I was giving away seeds and cuttings from my overgrown garden, later independently suspected she had it and was surprised I knew what it was. She pointed out that I was, in fact, quite flexible.But to get a diagnosis took far more time, effort, and anguish than it should have.When giving a post-surgical follow-up, the orthopedic registrar agreed, based on my hypermobility and skin stretch, that EDS was a possibility. However, he didn’t know who to refer me to. My report sat on a desk somewhere for months. I chased it up many times and eventually it was sent to the GP, telling her to refer me to the appropriate specialty for further investigation.The GP and I decided genetic services would be the best option.Genetic services declined to see me because they supposedly don’t do hypermobility disorders even though they say they see people for connective tissue disorders on their website.Rheumatologists are generally the next port of call if you think you have a connective tissue disorder.The first rheumatologist said I have Chronic Fatigue.I said, “I know that. Are you saying I don’t have EDS?”She said, “They’re the same thing.”In my opinion there’s cross over between CFS and EDS but they aren’t the same thing, so I argued my understanding with her. She was a bit weird and her advice was a bit sub-par, yet both my husband and I left with the understanding that, yes, I had EDS.Unfortunately for me, she didn’t write EDS on my files, so when I saw any other doctors they thought I was making it up.This included a neurologist who diagnosed my acute dystonia as being psychogenic, even though my husband pointed out that it was dependent on neck position. He pulled my mother aside to inquire about my mental stability at length. I had no idea what they were talking for so long about in another room until the appointment was over. I was livid when I found out. My mother, to her credit, did her very best to tell him that my mental health was fine.The skeptics also included the paediatrician I took my daughter to for chronic joint pain. He admitted he looked up my files and said I didn’t have EDS, but I did have mental problems and I needed to stop this nonsense of searching for diagnoses when nothing was physically wrong.At this point I did mental gymnastics trying to understand that there’s nothing really wrong. Nothing connecting my symptoms except mental illness. That I’m a hypochondriac. When that many professionals are telling you that, you’ve got to believe them, right?The one good thing the neurologist did for me was refer me to cardiology successfully (the earlier GP referral was declined). I think it was so he could prove that my symptoms were psychogenic, that I was mentally making my heart do weird things. He also said I didn’t have narcolepsy and that I just had chronic fatigue, which, given he was an old school doctor, he probably thought was another condition caused by hysteria/conversion disorder/somatisation.Cardiology saw me and tested me. The GP summoned me regarding the results and told me I have paroxysmal atrial tachycardia. I morosely asked if that was yet another thing I was psychogenically causing. She said no, but that doesn’t mean I wasn’t still causing my other problems. I got a referral to a psychologist to treat me for psychogenic illness (again), but also a bottle of beta-blockers.Life improved substantially with the beta-blockers. I could get out of bed. I could get out of the house. I could even cope with gentle exercise without guaranteed post exertional malaise knocking me back.The psychologist said I was mentally quite well with a healthy level of self-awareness. Just like the others I had been referred to in the last six years. Mild depression at most, one of them said.The voice in my head that told me there’s some physical condition connecting my health problems fired back up. It was too much to all be coincidental.My referral to a private rheumatologist was accepted.Finally, relief. He said I had classical Ehlers Danlos Syndrome, and so did my mother, who was also in attendance.Ehlers Danlos Syndrome is a group of heritable connective tissue disorders. They are systemic, and can thus affect many parts of the body from hypermobility of the joints, to brain herniation (chiari malformation, where your brain starts to fall out of the bottom of your skull), to autoimmune diseases like narcolepsy and rheumatoid arthritis. At least one type of EDS is deadly, and all significantly affect the lives of those afflicted with them.There is no cure for any type of EDS but there are genuine interventions that can substantially improve lives from joint-stabilizing injections (prolotherapy), to medications to control dysautonomia and other manifestations of EDS. Many doctors don’t seem to believe this, but EDS can be treated and the lives of patients can substantially improve with the correct care. I would like to think I am living proof of this, even if I’m still not anywhere near the level of functionality a “normal” person has. My life is vastly better even if I still can’t hold down paid employment (yet!).There are doctors who say it isn’t good to label diseases like EDS. I think these are the same ones who think there’s no treatment. But even if there were no treatments at all, this label has given me my sanity back, a community, and a means to understand the very real (but weird!) things that happen to my body and the bodies of my family members. Like the most common form of EDS, hypermobile EDS, classical EDS is autosomal dominant, with a 50% chance of passing it on to each offspring, so I have been able to help family members with their own health journey. My diagnosis is critical to me in every part of planning for my life, especially family planning. We won’t have any more children. And now I can finally start to address some of the causes of my pain, such as with careful physiotherapy to strengthen my joints.I didn’t know before I had my children, but they will be able to make more informed decisions and I can help get them assistance where they need it. I hope they won’t face the same level of dismissal over serious, life limiting health problems, should they crop up.After all these years, all these doctors, all the quacks my mother took us to after real doctors were no help, no one had never connected the problems until me and my random plant-seeking friend helped put it together, and my amazing family helped support me to get proper diagnoses confirmed.TL;DR: I was told most of my health problems were all in my head over and over until I tried my very best to believe it was psychogenic and accepted I just needed psychological help. But I actually had an under-recognized, under-diagnosed genetic disease which failed to be recognized properly multiple times even when I said that’s what I thought it was because too many doctors don’t really know what it is, how to recognize it, what to do about it, or they think it’s just a fad diagnosis.I just want to edit this to a) correct a typo I spotted and b) direct anyone (or anyone who knows someone) who has had a similar experience to the work of journalist Maya Dusenbery. Maya has written a book and numerous articles on the trust- and knowledge-gaps that women face when trying to get answers to their medical problems. She’s informative, empowering and I find her work highly engrossing to read. Here’s a link to the 2,000 word version of her book to start you off: Opinion | Medicine Has A Sexism Problem, And It’s Making Sick Women Sicker

Most of the answers here are from doctors or nurses. Allow me to answer as a patient.First, I’ll tell you a bit about my “experience”:I have had type I diabetes for 30 years, asthma for 29, Crohn’s Disease for 27, and hypothyroidism for 23. I have had Ehlers-Danlos Syndrome my entire life, but I only got diagnosed a month ago after 4.5 years of visits to no less than 60 different doctors, and dozens and dozens of tests.In my life, I have seen hundreds of different physicians. I probably have seen well over a thousand. The vast majority of these doctors have been M.D.s. But some of the best have been D.O.s.It is true that mostly, because the medical schooling system—and the medical system in general—reward all of the wrong traits (both in my experience as a patient and in my experience working in the medical field), D.O.s get less respect. And therefore, generally only the people who don’t get into allopathic (M.D.) schools go to osteopathic schools.HOWEVER, possibly because of that, D.O.s in my experience tend to be better doctors. Here’s my theory: The people going into medicine for the sake of ego are not going to “settle” for a D.O. They will just apply over and over to allopathic schools, and maybe go into a different field entirely if they never get accepted. So the people who “settle” for an osteopathic school are generally focused on the end goal of being doctors, not on the prestige associated with a given credential.The other difference is that osteopathic schools have always had a more holistic focus than allopathic schools. They teach their students to pay attention to the whole person—that their psychological and social conditions matter, and that a person is more than a diagnosis. In my experience as a patient, I can tell you the majority of M.D.s don’t get that.My asthma doctor is a D.O. whom I have been seeing for 14 years now. I have been able to see him for that long—even after having undergone extensive turnover among my M.D. doctors with recent insurance changes—because he accepts every insurance plan ever. He doesn’t drop plans the minute they pay him a dime less, precisely because he wants his patients to be able to continue to see him, and to afford care. His practice doesn’t seem to be suffering. He just considers continuity of care and access to care a priority. He has pulled me out of more scrapes with my asthma than I can recall. He is an awesome doctor. I dread the day he retires.D.O.s have a different attitude. I have seen some D.O.s who were asshats—there’s one in every crowd—but in general, they are some of the best doctors available. If I have a choice between two doctors (1 D.O., 1 M.D.) about whom I know nothing, I will go with the D.O. every time.In my experienced opinion, D.O.s are generally better doctors than M.D.s—but the old boys’ club hegemony of the current medical system in the U.S. is too screwed up to recognize that.