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Kelly Duplessis

Kelly Duplessis

Founder and CEO of Rare Diseases South Africa (RDSA), a patient advocacy NGO for rare disease patients, policy and access to care.

Sep 28, 2026

5:34
When the doctor tests, what exactly do they test for? Is it just a straight up blood test that specifically looks for a certain level of growth hormone or do they need to look at multiple things that should be happening at your age to get that answer?
5:53
So generally speaking, in adults, doctors don't diagnose it from symptoms alone.
5:59
So you would look at, they would do a clinical assessment where they would look at your symptoms, your medical history, and they would obviously do an examination.
6:06
That would be supported by blood tests, which would include actually, you know, hormone related measurements.
6:12
So actually getting values, hormone values.
6:15
They might do things like growth hormone stimulation testing, which then helps doctors easily assess, you know, how deficient you might be.
6:26
And they often will look at things like the pituitary gland as well, which is the organ that is responsible for actually producing the growth hormone therapy.

10 MINS LATER

17:03
kelly final thoughts on this discussion around growth hormone deficiency So I
8:04
Can you maybe share with us some of the challenges and information and data and patients that you come across and what their biggest struggles are from your diagnosis all the way to treatment?
8:18
So I think it's a very, very good question because realistically speaking, if you think as a parent, and this is where the vast difference between the public and private sector often kicks in.
8:30
So the public sector makes use of that road to health book and you generally speaking will take it with you at every clinic follow-up.
8:38
And I would actually probably say that your chances of identifying this issue earlier are probably better in that sort of environment where you're you almost have a reminder to check the child's growth versus in the private sector, where we often are seeing a different GP every time we go in for a visit, et cetera, et cetera.
8:57
And no one really goes back and looks.
8:59
I can speak for myself as a parent.
9:01
I can't tell you where my children are on the growth curve now.
10:55
What are the things we need to be looking at in relation to the growth hormone to And would it only be physical that you start to see it?
22:48
hear you.
22:49
So, yeah, that, and, you know, to your point about the, not only from an institutional perspective as well, but just the collaboration between individuals, et cetera, there is so much time and energy is spent asking a question, a research question that often actually would be framed so differently if patients were engaged from the beginning.
23:11
Yeah.
23:12
So the question might be, um, Does, you know, like as an example, monitoring the effects of the intervention of this treatment on this patient population.
23:24
When you speak to the patients, really the more important question is, you know, how their energy levels have been increased or etc.
23:34
So often just having that patient's engagement when framing the question and when understanding what is needing to be asked is so important.
23:44
And also the use of terminology.

12 MINS LATER

35:33
But are you feeling hopeful for where the space is moving? And do you think we're progressing where we should be?

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