My aunt was institutionalised on account of severe panic attacks, anxiety & self harm tendencies. My father, who believed his sister when she said it happened only around her menstrual cycle, took her out of that place (against her husband's wishes) & found a gynecologist. 1/

She was found to have severe lesions in her uterus (this was 30 years ago, endometriosis was not a term my father said the doctor used) and was advised to have a hysterectomy. My mother nursed her in our home after the surgery. In 2 months, she was a totally different person. 2/

2 years ago, when I received my hEDS diagnosis, I called her & explained about it. My father, once again, took her to a rheumatologist who confirmed that she was definitely hypermobile (which is why it took a long time for her to get an arthritis diagnosis). 3/

She broke down in tears saying that for nearly 60 years no one believed her when she said her bones were moving and cracking. She also has POTS (all my aunts do, as did my grandmother) & has had dizziness for as long as I can remember. 4/

You would think that after all this time patients would be believed but no! I wasn't believed for nearly 25 years! However, thanks to my idiotic persistence (as my father calls it), 3 generations of my family now have a diagnosis of hypermobility. 5/

My son was diagnosed when he was 9 because of this & has a great team of medical professionals taking care of him. He will not sit for more than one appointment with a doctor who does not believe his pain, knows his rights as a patient, will not take any medical gaslighting! 6/

@renudhinakaran 💯💯💯 how did you get a diagnosis for being hyper mobile? I think this is what’s going on with my body and serious arthritis but I don’t know what kind of doctor to see.

@_hoeletariat_ My GP suspected it and sent me to a Revalidatiearts (in the Netherlands), who diagnosed it after consulting a geneticist.

@renudhinakaran I was told I was ‘imagining’ my increasing migraines by a GP and to ignore the packet insert in my combined pill. Luckily I stopped taking them as another GP advised I was at risk of a brain haemorrhage!

@RachelP27974323 I had raised intracranial pressure from my bortj control pill so I can relate to this!

@renudhinakaran @Isa_11_AC I had a neuro interview me for syncope, floaters, memory issues, etc & without doing any tests say he said it was psychological.

@renudhinakaran @threadreaderapp unroll

@renudhinakaran Many years ago I developed a severe back issue where I couldn't even sit for more than 3-4 hours. Went to a very popular orthopedic and his response was it's nothing, just beat the pain. I was 27. No way this was something normal. Thankfully consulted another doctor.

@renudhinakaran That's a trouble when it comes to helping patients with chronic issues there are more issues which needs attention but unfortunately they are shedded off saying it's in ur mind and lastly I can't help beyond this

@renudhinakaran @Treadreaderapp please unroll

@renudhinakaran It's sad that we have to make statements demanding that doctors listen to their patients.

@renudhinakaran 💔💔 Thanks for sharing. This such an important message to tell ❤️

@renudhinakaran Wish I could find the help I need but it's not going to happen. Glad your Aunt did though. :)

@renudhinakaran Your father is amazing in his desire to care and advocate for all of you. 🥰

@renudhinakaran I'd love to find EDS professionals. Every doc we've seen has said "What's EDS?" *Deleted other tweet for potentially harmful word.

@renudhinakaran Or obesity. Help us manage our very real pain instead of blowing us off and telling us we have to wait until x amt of pounds come off before we can even speak of pain mgmt.

@renudhinakaran I know the exact moment a dentist stopped listening to me: When I said I don't bother taking pain medication for anything under a 3, because it doesn't work. My next dentist, I made sure to be up front about it. He's a good one, my pay, so I can see him, however is not.

@renudhinakaran Definitely this, I went to my doctors about multiple symptoms known to be linked to hEDS and was fobbed off by multiple saying it was IBS or vitamin deficiencies. Didn’t get my diagnosis until 2 years ago when finally one of the doctors listened to me.

@renudhinakaran This is like the direct inverse of generational trauma and I am living for it. Generational support that has filtered both upwards and downwards to make everyone’s lives better!