What a Patient With EDS has the Right to Expect From Their Doctor: Why Aren’t They Getting It?
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- Опубликовано: 16 дек 2019
- Professor Rodney Grahame discusses what those with EDS and HSD should expect from doctors and doctor visits, and discusses reasons they might not be having the experiences they believe they should be.
Transcript coming soon! Slides used in this presentation are available in PDF from bit.ly/36B1acA
In the ER I was told it's not easy being a princess. I will absolutely never forget that and sometimes I hear it at random times in a day sometimes especially when I'm not doing anything. I push myself too hard because of doctors like that. I hurt myself while cleaning my house and doing things that I can wait until later to do because of doctors like that who make me feel like I should be doing more. Bad enough I already felt these things on my own but a doctor like that that exist in this world who must hate us definitely makes it that much harder forus to be able to relax when we're supposed to but instead we push ourselves because we don't want to hear that in the back of our head repeating itself.
@@kashtoncayden1781 and what does that have to do with anything I wrote? Go troll somewhere else
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Don’t let those people inside your head. It’s bad enough they are allowed to practice medicine, don’t give into their gas lighting.
Hold your head high and remember that YOU ARE WORTH IT!
This very thing has made me many times disregard pain, injurys, suffering, you go to the Dr to only be told to take some Advil, it's a sprain, and get back to work! Rolling tinto another injury, fot hem to start questioning your work ethic, like it's my fault my fingers pop and dislocate?! Just yesterday I started loosing feeling in both thumbs, for the doc to only tell me to make an appointment for an emg...
If you have the money, go private and push the socialized healthcare far away.
@@spikeybunny6577 I am thier worst nightmare, the second the doctor starts goin on about irrelevant things, it's always nice to ground them with thier own topic of work.
Being told I am a Munchausen and need a Psupychiatrist .
Being told ,you are always injurying yourself.
No- one can have that many allergies !
Fainting if I have to stand in a queue .
I have multiple General Practioners as they become overwhelmed and start threatening to take me off my medications.
Arrogance and ignorance is what I have experienced all my life.
Thanks Julie,seems as though the ones that were trained to help need help Themselves.Higher learning can bring with it arrogance,pride and lack of empathy.Unfortunately this behavior is affecting all walks of life as the scriptures,2000 years ago explained in detail: Critical times hard to deal with will be here in the last days;men lovers of themselves, money,puffed up with pride,arrogant,not open to agreement.Sound familiar?
Sorry, that's awful! Fainting standing in line sounds like orthostatic intolerance (POTS is one type of OI), if you want to talk to your doctor or a cardiologist about an assessment - But maybe you already watched the video on that. Wishing you love, luck, and fortitude spoons. ❤️🍀🥄
I just had a new appointment with a primary doctor who told me “ I have family members like you: I will not be ordering any special tests for treatment for you. I was just diagnosed with CCI. I’m 65. I can barely walk. I’m losing all feelings in my limbs. I’m bedridden
I've been dealing with this since birth, I've been disabled with what I believe is classical eds or classical like heds. A rheumatologist stared at my classical eds scaring all over my legs & told me I was self harming & that I'd learnt the condition of joint pain due to being mentally ill. I lost everything due to his willful ignorance. I'm not mentally ill btw lol.
Dr. Grahame is a zebra amongst physicians, as EDS patients are amongst crowds of people.
I just want to thank professor Grahame for all he's done for our community. He diagnosed my identical twin sister in 2014. I am now diagnosed with hEDS but this was a difficult journey despite the fact that my sister was already diagnosed. The first rheumatologist I saw didn't believe my sister had been diagnosed and when she asked me to do the Beighton score she looked away and then stated in her letter that I wasn't hypermobile. So I printed out my sisters diagnosis letters (from Dr. Matthias and Prof Grahame) and took them to the hypermobility clinic in London where 8 was diagnosed. My point is if I found it difficult to get a diagnosis how difficult must it be for those who do not have the evidence I had. We both actually pass the 2017 criteria independently of each other, but if a doctor is unwilling to take you seriously they can ignore your presenting signs. I just can't thank Prof Grahame enough as without him I never would have known that I had EDS and wouldn't have known where to start.
Thank you for this. I've come to forget any expectations of compassion, and it's... Really nice to feel validated at least.
My 12 year old who has all the comorbities has said my drs think they are better than me...
A true gentleman.
Amazing Dr. If only we could all get to see you! We would all be better off.
Right?!? Just once even? 🙏🏼🙏🏼🙏🏼
Oh please help me. God the pain is so terrible and the attitudinal arrogance bullying . I just can't stop crying. Thank you Dr Grahame. My family name is Graham. I am so proud to share that with you who always understand me completely. Broken in Minnesota.
@@BlueBirdsSong Thank you kind lady! Your comments make me cry. It is inhumane how we are treated. They are cruel and ugly. The experiences are so demeaning I cant even think without crying. Don't go to assisted living it'll kill you. I am not a person anymore. They are not required to provide food I can eat. rent includes food . In prison they have to give nutritious food that respects ones religions. In Inassisted dying they have no regulations. They say if I need help I have to go to nursing side. I am 61. too young to be thrown away,but eh,this is amurica. thanks for listening we both know they are never going to listen.
Everyones telling me my symptoms are hot air or psychological problems and I imagine the pain.. I lost everything and get treated like a hypochondriac while trying to get the money for the medicine I have to pay for myself
@@humility1st Humility is a weakness to them and don't understand it as their higher learning emphasizes status,arrogance and money.This lack of self control and care was was detailed for us 2000 years ago:In the last days men would be lovers of themselves and money,headstrong,puffed up with pride,no natural affection,not open to agreement and many more,2tim3:1-5.I encourage you to read it and keep in mind this behavior will end as only the meek will inhabit the earth.
I would like to say thank you to Professor Grahame for 50 years of dedicated medical research.
I hope you are teaching this, and future generations of medical students how to be more medically aware, and enthusiastic to learn and explore their chosen profession with a similar enthusiasm and curiosity to yours.
That’s because they are not willing to give us the time! We’re just their meal ticket. That’s how I feel that my doctors treat me, minus my Women’s health( OB/ GYN). She treats me better than my GP and my Neurologist’s FNPA , unfortunately I don’t see my actual Neurologist.
Thank you for speaking out💖
That’s it!,, I am gonna set up a treatment centre in the UK. Xxx
Count me in 😍
How affirming and confirming. Soothing to this heart of mine for I am quieted by truth. Thank you.
Yes, indeed, really takes the biscuit. 👍
Please provide the wording for his speech pleaas
I’ve had at least 10 doctors who were so awful to me that I stopped seeing doctors for several years. One that even threw my chart at me. Something I was so completely shocked by I didn’t even know how to process what had just happened.
😮 I was physically removed for being sent to the Gp by a&e, for a medication review. I hadn’t known I was suffering from high bp and all sorts of MCAS symptoms from the pain management. I was then asked to leave the surgery for insisting she check my B.P, like they’d asked me to.
I was discharged from Prof Gs clinic shortly after my mother's traumatic death as I was told nothing could be done. Just marvelous.
So sorry for your loss Lucy - do contact our helpline team if you'd like any advice or support: www.ehlers-danlos.com/eds-helpline/
WOW.
I am A EDS Warrior. What doesn’t kill me Better Run! I bought my personal Dr a book”what what patients say, What Doctors Hear”. I have Specialists for every part of my body. And I demand respect. I am unique, a Beautiful Disaster.
🎉❤😊