International Unicorn Connections & Consulting

24/03/2023

I have reached 100 followers! Thank you for your continued support. I could not have done it without each of you. 🙏🤗🎉

09/01/2023

One of the best parts of my job is getting break throughs when talking to health professionals and genetics departments.

I’ve been pushing hard to get answers with a genetics department and finally got the result I was looking for.

They agreed to see a client for a review, which was the best news I got today. This is all important stuff when clients are applying for the NDIS.

18/05/2022

It’s been a while since I posted.

This page going forward is where I’ll post about EDS, POTS & other related issues.

I’ll share my blog and other bits and bobs.

08/03/2022

Love this!

A doctor once said to me I was complaining of so many different things that if I was a dog, they’d put me down. I was 18 years old.

My right leg rotates inwards 40 degrees. After a few failed surgeries on my knees a surgeon put me in traction and said to me he was doing it just to prove that it wouldn’t help, and that the rotation was irrelevant. I was 15. I was made to feel stupid and ashamed.

Another doctor told me that the reason I struggled for breath growing up was because I was over thinking breathing and was anxious. Apparently my very marked dent in my chest, a known issue in connective tissue conditions, was irrelevant.

Another doctor told me after I had been put in a cast for recurrent fractures on both my wrists that I was just unlucky, and when he finally realised that it was because all the tissues around my bones were fragile, rather than the bones themselves, he did not think to investigate why this could happen to a ‘seemingly healthy’ teenager.

When my POTS symptoms first occurred I was in hospital after a liver infection. Apparently the cause of heart rate shooting up and my blood pressure crashing every time I stood up, was because I was anxious about going home.

I could go on & on. I will never take for granted how privileged I am now to have access to the latest information & the worlds leading experts on EDS after spending years in the wilderness. But I know that so many of you are still battling through alone. It’s what drives me & pushes me to keep doing more so we do not have to listen to these ridiculous narratives any more.

There may be some who are anxious, but who wouldn’t be after years of being bounced from doctor to doctor being disbelieved & made to feel stupid.

There may be some who are depressed, but who wouldn’t be after facing a condition with no approved therapeutics or a cure?

For so many the physical causes the psychological, not the other way round.

We are working so hard every day to make things different, to improve diagnosis and to fight for management and care.

I’m sorry for all of you still battling to be believed and validated. All I can say is I see you, I believe you, and it’s not in your head. ❤️

24/12/2021

Australia’s ever-increasing list of state and national championships for golfers with disability continues to grow.

30/11/2021

It’s been a very busy few weeks. Taken on a few more clients and love being able to help people get access to the care they so desperately need.

25/10/2021

It's ! Autonomic nerves regulate our heart rate, blood pressure, digestion, dilation and constriction of the pupils, kidney function, temperature control, and much more! People living with dysautonomia have trouble regulating these systems which can impact the entire body. Help us fund research to find more effective treatments for people living with dysautonomia at CureDys.org/donate.
Share this graphic to raise awareness!

12/10/2021

Great explanation!

20/09/2021

This week is . ⁠
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An aortic dissection is a tear in the inner layer of the aorta, the major artery carrying blood from the heart to the rest of the body. The tear causes the aorta to swell and may burst if medical intervention is not performed immediately. ⁠
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Aortic aneurysm, dissection, and rupture are known to occur in some of the rarer types of the Ehlers-Danlos syndromes. This can also occur in the medium and smaller arteries. Typically these arterial complications are recognized as a complication of vascular EDS (vEDS), but are also a greater risk in classical (cEDS), kyphoscoliotic (kEDS), and dermatosparaxis Ehlers-Danlos syndrome (dEDS) in particular. Learn more: https://www.ehlers-danlos.com/aorticdissectionday/

07/09/2021

'Not disabled enough'

"If you have a condition where you can participate in sports as a disabled person, accessing it isn’t always easy. I’m a dancer, and whilst dancing isn’t in the Paralympics, you can compete worldwide. I have a strong background in dance, and after training pre-professionally, competing worldwide would have been something I would have considered. However, I’m not ‘disabled’ enough.

To compete for the Paralympics, and competitive dance, you have to fit into the classification system. This system has hit headlines time and time again, with many competitors reclassified and having to compete at different levels despite having the same condition, or, being kicked out of their sport. Some of my main conditions are on the list of excluded conditions for competing. On the exclusion list is “An example of a Health Condition that primarily causes hypermobility or hypotonia is Ehlers-Danlos Syndrome.” This excludes me from even thinking about being able to enter the competitive scene."

Kate Stanforth shares her feelings about the limitations of the Paralympics, and the need for better awareness, representation, and opportunities for all disabilities in society. Read here https://wheelair.co.uk/we-are-all-paralympians/