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Author Topic: journey of bi-lateral derotational osteotomies of tibias for my daughter  (Read 52577 times)

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Offline vl7007

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Hi everyone,  Just wanted to give an update.  So much has happened in the past year.  I met with royalty, spoke at a World Toilet Summit on Sanitation and Hygiene, worked with government regulators on changing the building codes to better support people with complex medical, disabilities, the elderly and parents of small children.  Set up a Charity called Accessibili-t.org and developing a social enterprise.  Talked about toileting for people with mobility issues and am now changing the Human Rights Act.  I realised that the only thing limiting me was my belief in myself.  How my body functioned required some interesting strategies for going forward.  But without purpose, I was dying and giving up really wasn't an option.  So have a look at my webpage Accessibili-t.org or Accessibili-t.com.au or Facebook, see how despite pain and problems with my knees/legs/body I am going forward and empowering people globally.

Offline vl7007

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Since the last update, so much has happened.   Kat was a baton bearer for the Queens Baton Relay as part of the Commonwealth Games in Australia.  She managed to propel herself up a hill only a couple of weeks post discharge from the cornary care unit of Royal Brisbane and Women Hospital after spending a week in there after contracting 3 different types of gastroenteritis  (one bactrial) which depleted her body of potassium and magesium.  Requiring 5 days of continuous IV potassium infusions.  Ironically she didn't contract any of these from toilets.  Kat was awarded Queenslands Emerging Leader for International Women's Day by Access Australia and met with the Duchess of Cornwell at the WOW (Women of the World) Conference  a couple of days later.  2 weeks ago she was honoured with the University of Queenslands Create Change - Qld Young Achiever of the Year award. Before flying down to Sydney to meet with the Disability Discrimination Commissioner for the Australian Human Rights Commission  to discuss amending the Discrimination Act and putting forward an amendment to the UN Declaration of People's Rights, to include the Right to Toilet with Dignity. 

Offline vl7007

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #92 on: December 12, 2018, 11:55:21 PM »
Hi everyone.  Just wanted to bring you an update on how I have been going.  Well I recently gave my first TEDX talk. Have a look as I was wanting to inform the world that Toilets aren't accessible, and how we can improve sanitation, hygiene and safer for everyone.  Enabling them to come out of the shadows.  But more importantly I wanted everyone to know that they have to ability to create change in their own lives, only they can empower themselves and go forward.  So please look and let me know what you think
https://www.youtube.com/watch?v=0m9RE0QFxlk&t=2s
 :)

Offline Brandon123

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #93 on: December 13, 2018, 04:09:50 PM »
Well done Kat, you're awesome!  :)
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline vl7007

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Re: journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #94 on: October 05, 2019, 03:37:52 AM »
So much has happened since my last update, and I realised that in the past few updates I have told you of some of my successes, but I hadn't really explained how I got there.  I did start in one by talking about changing things around the house to encourage me to get out of bed.

However, I wanted to give everyone some emotional support and demonstrate that when we go on this site it is to find answers to questions. We are vulnerable, confused, often overwhelmed and in pain.  It is hard for us to see a positive future.  But I need to let you know that we all go forward.  Often we stop looking at the site once our health resolves or we come to terms with our outcomes. We don't feel as dependent on the search for answers.   

The reason why I occasionally put on an update is to demonstrate we do have a future, and it can be as wonderful as we want.  It is up to us as individuals to learn to deal with how we feel about ourselves and what we do to change our situation.  I might never walk again, but that is okay.  I have learnt that I can use my impairment to my advantage.  I use it to create change on my terms, it just happens to include creating a global impact.

Ten years ago, when I started this blog subject.  I was looking for answers, I was scared.  As a high school student in her final year of school about to undergo major surgery bi-laterally and not knowing the outcomes.  Who wouldn't be scared.  My problems escalated over the years, and many times my mother did the updates as I wasn't capable, or in the head space to deal with it.  As much as I wanted to share my story, I found it difficult to see past the pain and confusion.  My life evolved around hospital, doctors, therapy, and painkillers.  But nothing really seemed to help.

My focus was survival, as the doctors had sent me home to die multiple times over the past 10 years. It took the tough love of my mother to pull me out of this head-space, and change my focus from survival to living.  Telling me to get out of bed, and live my life.  Whilst some changes I mentioned in a previous post, like changing my physical environment around the home to give me more access and encourage social interaction. That was just the beginning.

To listen to mum and become anything I wanted was challenging. Back in 2016, I had to make some major decisions, and think about my goals. Mum showed me that my life was more than my physical impairment.  That I could still do things, I just had to work out how to do them.  I needed to be creative, so I told her I wanted to become the Face of Change, and create global impact as a Change Agent. 

I wanted to be a part of society and not live in the shadows, stuck in bed, just existing. I also wanted to make it easier for people with disabilities, the aged and complex medical to be part of society and improve sanitation outcomes. I decided my main focus would be around on inclusion and access for all people, I wanted to start with changing society's perception on what this means and how it was important.

So mum helped me break it down so that I could deal with the massive task, and believe me it is.
Starting with research in the local community, then expanding it across the world.  Looking at problems, solutions, and issues with standards, government and societies expectations around sanitation and ways of getting others to join my journey.

And over the past 3 years I have learnt that having something else to focus on, really helped me to gain better control over my health situation.  Not having the medical answers didn't change anything, being frustrated and angry or upset about it didn't help.  I took time for me to be accepting about my limitations, and accepting that not having the answers wasn't important.  It was more important to change my attitude and go forward.  I needed to have goals to live for and create my own future and start living. I had missed out on nearly 7 years of my life, away from society and I wanted to live again.  I just needed to work out how I could achieve my dreams.

So with my mum's help and a group of incredible people I create a charity called Accessibili-t Ltd, with a mission to create awareness, advocacy and improve outcomes around inclusion, access, diversity and sanitation.  I worked with government to improve building standards and am in discussions around health standards as well.  Then this year I created a corporate organisation called Accessibili-t Plus which would provide services and product solutions in regards to support inclusion, access and sanitation.  I also worked with a couple of universities around design outcomes and policy awareness.  Now I give talks and presentations around this and it has given me a whole new outlook on life. A bonus of this means at times I get to travel as I talk and evoke change in other communities.

I have had many highlights over the past couple of years some I have mentioned in previous posts.  This year I was selected as one of three Emerging Young Leaders as a Civil Society Delegate and Australian representative to attend a conference at the United Nations Headquarters in New York.  It was the 12th Conference of State Parties for the Rights of Persons with Disabilities.  It was just an honored to be selected, and whilst there I was given the opportunity to give an intervention (statement) at one of the forums on Capacity Building, about ways governments can economically improve outcomes within standards and allow greater inclusion.

Listening to the Head of World Health Organisation and Pan American Health acknowledge my advocacy and work in relation to improving sanitation as part of his round table discussion on Health two days later was incredible. 

But imagine my surprise to learn whilst I was in New York, that there are villages in Kenya that have not only watched my TEDX, but discussed ways of improving their communities.  Now they are working together to improve sanitation and access, and that I have a following of over 50000 people in Kenya...then in India, Nepal and ....I was totally lost for words. 

I realised that I was having a global impact, simply through talking and demonstrating how together, each of us create change every day.

Since returning home, in addition to catching up on everything, and working towards our next trip to the UN, (looking at both Geneva and New York next year) considering going to Brazil for the World Toilet Summit.  I have spent a lot of time in and out of hospital, with flu, hydration issues, etc.  Then mum has also had issues with her osteoporosis, as she hasn't responded to the infusions and now her bones are like someone who is 97 years old.  So our health issues haven't gone away.  But we try not to let this stop our dreams and goals.  Sometimes, things take a bit longer to achieve.  Having said that, with the help of others, I can see how I have truly achieved so much in the past 3 years...and it makes my head spin.

Last week I finally got some news from my geneticist.  The results have given a part diagnosis for my condition.  Apparently I was born with a chromosome micro-duplication on 16p.11.2 which explains a lot of my issues growing up.  The grey issue though is a defect with gene COL1A1 and this has the specialist confused as I am is so tall, and he says that I should be short stature.  He is questioning the results, as the blood work came back with osteogenesis imperfecta and a possible overlap with Ehlers-Danlos.  If this is the case it will also explain most of my other issues. 

So now both of my parents are being tested for these defects.  If mum comes back positive with the defective gene COL1A1, then they will better understand her osteoporosis. If either parent comes back with the chromosome micro-duplication,  it might also explain my brother's issues, our family platelet defect, and everything.  And whilst it doesn't change my treatment much, and the final answer is not conclusive yet, it does give us more answers.  And knowing that my results may also lead to improved health and education outcomes for future generations in my family and for others with this condition is important and exciting to me.

As currently I go to hospital every 4 weeks for IV fluid infusions to help keep me hydrated.  Having focus on other things and keeping busy, means I am not focusing on my pain as much.  So I have been able to reduce my medication dramatically, and I am able to focus so much better.  Having said that, I am possibly more opinionated, and make a lot more decisions in my life.  Which in turn means I am living my life better.  I now have access to better supports under a government disability support scheme, which provides supports in the home so that I can have more control and do more in the community.  Which is also positive. 

So again a lot has happened even in the past year, and I have learnt that I can leave a legacy.  In multiple ways.  I have purpose.  As do you.  So keep asking questions and looking for answers.  Acknowledge, and accept that life goes on, and you can and do have a future.  Only you can live it.

I would love to have some of you readers, come on to this blog and tell me what your dreams are.  Or how you are coping and how you are going forward.  As so many have looked at this blog.  I want to connect and know that this blog is helping others.  As it has truly helped me go forward.
« Last Edit: October 05, 2019, 09:44:25 AM by vl7007, Reason: typing errors, I needed to clarify some things as I didn\'t read it prior to posting »