Osteogenesis Imperfecta

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Osteogenesis Imperfecta
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My Story

Born 1962,in a very small home in a small town - Warburton in Pakistan ,I think my illness was triggered by repeated influenza and compounded by adverse childhood experiences, ,PEM,Pain,Insomnia,Anxiety,guilt Depression engraved in my developing fragile personality.

Later I managed to complete my medical studies with mild to moderately impact (at 60-70% capacity) and struggled through my career for 30 years, although there had been crises in 1991, 2001 and 2008, like toothache,iatrogenic tooth extraction, facial pain ,relationship problems. There were waxing and waining capacity 30-40%, but candle of life some how remain lit but flickering.5 years before retirement (60 year),It looked I am totally burned out when every faculty of me dropped to 20-30%.

ME lived in me and lead to a changed personality. My vigor and zeal, my pleasure of life, were stolen.Now I have  cognitive dysfunction , loss of creativity ,social handicaps/isolation,muscular weakness , many psychological emotional problems,thermo dysregulation,plantar facitits, shoulder impingement etc.

Inspite of all, poor concentration, fog,fatigue,confusion I managed to get higher medical education from the top universities of Pakistan. I hold degrees MBBS ( King Edward Med. College),Clinical Pathology Diploma and & Master in Public Health ( MBBS, DCP, MPH) from top Universities of Pakistan

Ironically Medical fraternity of my country do not recognise this multiprong illness which I must call a disastrous disease.There is no data or any research here. I taught myself from world of  Internet and research organisations,support  groups ,OMF, Action for ME, the ME Association ,IASP ,Pain management ,relevant psychological organisations ,Doctor with ME .

PEM, marked Insomnia , left sided head to toe widespread pain,TrP in left eye,neck, profound muscular weakness,balance problems, brain fog,anger,aggression, anxiety and depression, guilt .what not to mention. In 1998 my class fellow psychiatrist labelled me a resistant depression patient because he tried every anti depessant on me.Ultimately he administered 5 ECT shocks to me.Thanks to my Doctor wife who looked after me. In 2008 ,a young psychiatrist who was qualified from abroad, for the 1st time, said to me " You are suffering from Fibromyalgia ,Take Cymbata ( Duloxitine, and you ll be good".Now I know ME more than many Medical specialists. But I've no or little voice and support.

I consulted my class fellow- a well known rheumatologist.He said “Shafiq! you just exercise, take some supplements: CoQ10, duloxetine, pregabalin etc.” and I was thinking this guy doesn't know the storms and flames within me.

My fingers are painful write all this .Speaking is some time difficult . sometimes I feel internal tremors.double vision.GIT upsets,ectopic heart beats.By hit and trial I take some pain killers, Amitryptaline,Clonazepam .There is no collaborative team here to treat or advise. So I am the care provider of myself. The last few months have been very troublesome, and I begin to suspect that I am progressing to Severe phase of this illness. Mostly I am in home. but I drive car and run a small Lab to rehabilitate myself.

I want to give hope and help to me and everyone suffering ME in the world conveying that Earth is still smiling by beautiful flower of spring. Every bird are cheerful,why not We,ME.

This crypto disabling disease is not new.Much research is going on in the world especially UK.who gave name & recognition as ME.Otherwise it is degraded to CFS and Fibromyalgia. We should open minds and eyes to find a cure for this disease,by research ,technology as we have conquered many diseases in the past.it will be too late for me, but I look light of hope and help on the other end of this bewilderment and darkness.

As a doctor and a #globalvoiceforme, I would like to say to the world’s health authorities that this is a real physical disease. Quantify it's impact by Epidemiology,DALYs, BoDs,making Millions Missing who could be Millions of economy of a nation.

A side story: I have 18 year old son who was born in2005 with Osteogenesis Imperfecta type 3 (brittle bone disease). He had 35 fractures before he was 16 years of age and thankfully his rodding surgeries were done in Canada and US. He has chronic pains and, I suspect, ME/CFS. I rehabilitate this wheelchair bound son also. The literature shows the disease runs in families. May it not be so!

To complete the questions Shafiq took many days with pacing and lying in bed.it took many hours to recover .

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#ChronicIllness fighter . Living her best life! Overcomer ! #epilpseywarior Hidden Invisible Autitsc Striped zebra! With a creative mind!

#epilpsey Sezure awareness ; #MentalHealth
Hidden disbalty . Fribomlga warrior #LymeDisease #AspergersSyndrome / autism awareness! ADHD . #OsteogenesisImperfecta { brittle bones/ cognitive tissue disorder} hypersensitivity.
Sensory processing disorder! #JointHypermobilitySyndrome hypermobile Elers Danilo’s syndrome #RsdCrps

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I'm new here!

Hi, my name is DiscoSeahorse8655. I'm here because
I have Osteogenesis Imperfecta type 1, Aortic Heart valve leak, Congestive Heart failure, A-fib, Type 2 Diabetes, Asthma, Reynauds Disease, Degenerative Disk Disease and, s3 a Rheumatologist tomorrow because my Podiatrist thinks I have Rheumatoid arthritis.#MightyTogether

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I'm new here!

Hi, my name is MBaldwin. I'm here because I have OA and other Chronic Health issues. I want to learn more about living with Chronic pain. I am also legally blind and have recently been diagnosed with hearing loss.

#MightyTogether #OsteogenesisImperfecta /BrittleBoneDisease#Osteoarthritis

3 reactions 2 comments

Start of the year and the pressure to go to the gym

I don’t love exercising. I know the theory around it (apparently, exercise is good for you) but as a person with a disability exercise can be hard. Especially when the start of a new year brings a wave of fatphobic resolutions and pressure to go to the gym and “get fit”. The mentality shifts from Holiday fun to marathon runners saying, “Wake up at 5:00 AM and I show your body who is boss!”. I tend to roll my eyes and think, “I’m more in a constant negotiation with my body”. The idea of ‘making’ my body do anything is so far from my experience that I just have to laugh. I have Osteogenesis Imperfecta or brittle bone disease, that makes my bones very fragile and easy to fracture. Most days I am juggling with different versions of my body depending on the amount of pain I have. Still, excising is one of the best things anyone can do for their health, so I try my best to keep active. Because of the reality of my condition, I can’t go to a fun Kickboxing class or take arial aerobics like some of my friends do. But I apply the same method I have for other things in my life, and I adapt exercise to what works for me. During the lockdown period of the pandemic, I did yoga videos from home and adapted the poses to do them sitting down or without applying pressure to my knees and legs. Now I mostly walk around my neighborhood with my dog. I love to be outside and that makes the excising experience a more positive one. I comes with its challenges, for example I have to be careful the ground isn’t wet so that I don’t fall and get injured. But I like it so much more than going to a gym. When I walk outside it is a chance to go at my own pace, to really think about things and observe the trees and world around me. It’s not fast, because I can’t walk fast and that is ok. Recently a friend invited to me to go with her to her gym and try a yoga class. Last year I got a pass to my local gym and tried two classes. Just walking in the bright lighting, I was a little uneasy, gyms are spaces mostly occupied by able-bodied people, and the kind of people that want to perfect their bodies. These gym-goers tend to be comfortable in tight clothing, sweaty and showing off their pecks… and I’m more on the “give me the stenchiest leggings available to mankind” team. Nevertheless, armed with my pass and rolling in with my blue walker, I went to two different yoga classes so I could get the feeling of each one. The first class was wonderful. The second, not so much. The big difference was in the instructors. I chatted with each one a few minutes before the class and told them a resumed version of my health condition and that I wanted to adapt the class. They both agreed but the dynamics of the class where very different. The first instructor would pass by my mat and offer suggestions of poses or nod encouragingly when he looked up from his poses at the front of the room. The second teacher barely looked my direction the whole class and while she walked around the room full of mirrors, she purposely avoided my corner. I knew right then and there that that class was not a good fit for me. Luckily, I had a more positive experience with the first class, if not I might have left the gym very disappointed. In the end, I decided that gym was not the one for me. If I decide to try a gym again, I know what I am looking for: eye contact is important, feeling welcomed is important and I will not be going to a class where anyone wants me to be invisible.

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Kissimmee Florida area, is there anyone here that has Osteogenesis Imperfecta? I feel so alone with this disease. I’ve had 102 fractures to date.

#OsteogenesisImperfecta i have screws in my knee and hip. A titanium rod in my femur to hold it together. ive also suffer from hearing loss and have hearing aides now. A few years ago I decided to go with dentures because of the DI. BEST DECISION I EVER MADE. I pray that someone will answer my post so that I can have someone to talk to about the issues around OI. GOD BLESS!!!


I'm new here!

Hi, my name is Ren. I’m new to The Mighty and look forward to sharing my story. I am currently diagnosed with anxiety, depression, gender dysphoria, ADHD, POTS, and I am in the diagnosis process for EDS, ASD, and possible osteogenesis imperfecta. I'm a minor and my pronouns are he/they.








#Dysautonomia #POTS #osteogenesis



I need a shower. But I’m petrified. I know this sounds 😛.
I live with Osteogenesis Imperfecta, with 102 fractures to date.

Now I’m sooooooooo scared of falling again and fracturing something.
I need a shower, but I’m so scared.