Hip Dysplasia

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Mum gaslighting my childhood illnesses

I have only just started to research and understand my 2 childhood problems and how down played they were and the understanding now in how serious they are, the effects on my life and the lack of knowledge has meant I have not understood the importance of being able to identify my need of a hip replacement earlier I was diagnosed with hip dysplasia at birth and had multiple treatments to correct, I was then diagnosed with Perthes Disease and underwent a further operation, I have now discovered how rare the disease is and the combination of the two means my THR is extremely difficult 😥. Also understanding that I have suffered a disability my entire life and had no awareness about this.#RareDisease #LeggCalvePerthesDisease #HipDysplasia #neglect

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I'm new here!

Hi, my name is delightfulgal4. I'm here because I was born with hip dysplasia and have had hip surgery at 48. Last year May 2022 I dislocated my knee and my peroneal nerve was severed. Now I have foot drop and have to wear an AFO. not the easiest but it is helping me with my gait and lifting my foot

#MightyTogether #HipDysplasia

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Cerebral Palsy and Aging

I'm 2 days past my first round of Botox for muscle spacisity due to Cerebral Palsy. As a child I was considered mild type 1 Cerebral Palsy but with aging I've been rediagnosed as type 3 moderate. These changes mean additional interventions such as braces and Botox injections to keep pain low and reduce complications like my arm freezing into positions that are unmanageable. Looking for others who've used Botox and hoping for some encouragement! #CerebralPalsy #HipDysplasia #BladderIncontinence #Disability

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Diagnosed w/cp as an adult #Lifewithmildcp

Hi there,
My name is Courtney. I'm currently 45. I have mild spastic diplegic cerebral palsy. Growing up I had all the therapies during school, though no one at the time knew what was going on with me! Yeah, odd no one knew I had cp till I was an adult and had to go for testing for SSDI because my pediatric files were lost or destroyed.
CP affects my legs and my hands.As a child I had to have a guard on my pencils to try to get me to grip it correctly. That failed. I also had hip dysplasia on the left side which resulted in it being pinned. I recently learned that was a cp thing. Go figure

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I’m new here!

Hi, my name is bentleyplaysviolin. I'm looking for a community to relate with, and learn to deal with the mental challenges of chronic pain

#MightyTogether #BipolarDisorder #AutismSpectrumDisorder #OCD #ehlers-DanlosSyndrome #ADHD #VonWillebrandDisease #IronDeficiencyAnemia #SocialAnxiety #HipDysplasia

3 comments
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I’m new here!

Hi, my name is Brunette_Rhyme. I've been diagnosed with and am a long term sufferer, I have other conditions but they are not on this radar however that does not surprise me. I feel out of 32 neurological and a mess of a muscularskelatal, my body is heading for another change. How long before we know what’s going to happen is anyones guess. My biggest obstacle right now is I seem to be my carer’s carer. I have a new set of carer’s coming on board. My new NDIS package has come through and finally I had and awesome LAC who knew what she was talking about. We have fought so hard and finally I received a package where I now might received the care I need instead of laying on the floor in a pool of blood in the morning whether I have an Apple Watch on or not. It is all dependant on the impact of the fall and mine are usually low by the time I hit hard. I have been on dexemethasone for nearly 3 months this time and it’s taking it’s toll and my doc does not get back from holidays for another month. I have to hang on as 2 hospitals have nearly killed me and I refuse to go down that road. I have an induction on Monday and really need these carers up to speed. I have one carer who is about to take leave and is on holidays to Italy. I hope she has and amazing time and sadly another one I have just lost as she had a fight with another carer to whom where previously friends. She put me in a very awkward position of choosing. I refused to and split them apart. It was not good enough so she resigned. I am very sad for this and I see her hurting right now but as the say with Pride come a fall. She knows I am very fair and kind however she needs to ask me. I guess I am reaching out for some moral support as I am truly exhausted and know I need to hang in there. I hope every is doing the best they can? If you are having reasonably good day, share and extra smile for the rest of us and we will do the same in return. J

#MightyTogether #Anxiety #Migraine #Fibromyalgia #ADHD #PTSD #RheumatoidArthritis #MultipleSclerosis #ChronicIllness #CentralPainSyndrome #MyofascialPainSyndrome #ChronicInflammatoryResponseSyndrome #UrticarialVasculitis #CentralSleepApnea #CentralSensitizationSyndrome #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems #MultipleSystemAtrophyWithOrthostaticHypotension #HipDysplasia #DegenerativeDiscDisease #DentatorubralAtrophy #MyotonicMuscularDystrophy

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Undiagnosed neuropathic pain.

I turned 26 this year and have been suffering from chronic pain since I was around 19

Lots and back and forth with multiple specialists and doctors appointments has eventually lead me to a diagnosis for my hip pain - I have hip dysplasia that has somehow gone un-diagnosed since birth.. I have been told I need to have PAO surgery to correct this.

However, alongside this hip pain I have been suffering from many neurological symptoms which seems to have been swept under the rug since my DHD diagnosis. I am still chronically ill underneath my hip pain and no one seems to be doing anything about it.

My nuerological symptoms include the following:
- Sickness/nausea
- Dizziness
- Hyperosmia
- Neuropathic pain in my legs, arms, shoulders
- Complete numbness/change of sensation in my shoulder blades and between T7-T12
- Numbness that radiates down my left leg
- Muscle spasms/ spacsticity in legs
- Bladder issues
- Chronic fatigue
- Balance issues
- Cognitive issues such as thinking and concentrating
- Occassional blurred vision/ vision changes
- Migranes

I have been seen by and dismissed by numberous doctors and consultants, no one can seem to figure out what is wrong with me. Some of them have actually accused me of making my symptoms up.

I have seen 2x Rheumatologists that investigated Arthrtitis and Lupus, both concluded that there was nothing wrong with me at all whatsoever.. I have a positive ANA and Anti-dsDNA but still no diagnosis. Discharged by both of them with no further action.

I am currently under the care of an Orthopaedic Surgeon (for my hip) who seems to think my symptoms point toward Fibromyalgia but obviously this would be diagnosed by a rheumatologist and I have already been discharged by two.

I am currently on a waiting list to see a neurologist. I have been on this waiting list since May and I am lead to believe I will be waiting quite a few months yet.

I feel incredibly alone in my journey. Everyone I know who is my age have no idea what it is like to deal with chronic pain, let alone the burden of an undiagnosed illness. Every time I attempt to talk to anyone about my ailments, people are dismissive, don’t understand or are simply uninterested.

Can anyone offer any advice ? I feel hopeless. I have no support. 😢

#ChronicPain #DevelopmentalDysplasiaOfTheHip #DegenerativeDiscDisease #Fibromyalgia #MultipleSclerosis #MyalgicEncephalomyelitis #ChronicIllness #Migraine #Lupus #Arthritis #CervicalSpondylosis #AnkylosingSpondylitis #Neuropathy #PeripheralNeuropathy #AutoimmuneDisease #BackPain #ComplexRegionalPainSyndrome #Undiagnosed #RheumatoidArthritis #sjogrens

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