Latest / Tom's Hirschsprung's Podcast / Episode 5 - Interview with Carla Scaramella

Transcript

Episode 5 - Interview with Carla Scaramella · Tom's Hirschsprung's Podcast

0:05
You are listening to Tom's Hirshprung's Podcast, where our provide a look into the
0:09
remarkable experiences of the most inspiring people around Hirshprung's disease and sports. Welcome to
0:29
episode five of Tom's Hirshprung's Podcast, and today I am joined by doctor Carla
0:38
Scaramella, who is the director of Hirshprung's Argentina and also the third part of
0:46
the trio that co founded this podcast, along with last week's guest Luisa Shapton.
0:53
And welcome Carla to the podcast. Thank you Tom for inviting me to
0:59
this podcast. I'm very honored to be here. Thank you, Thank you.
1:06
So just before we go into Hirshbrung's Argentina and the great work that you
1:11
do all across South America, I just wanted to talk to the listeners about
1:18
who you are and what you do and your background. Upon reading your LinkedIn
1:26
page, it says you have twenty years or nearly twenty years in clinical research
1:34
and that's all across South America, Argentina, Chile, Peru and Colombia.
1:42
What made you want to go into clinical research? Well, first of all,
1:53
I'm my back grown it's also I'm a pharmacist, so I am very
1:59
keen on the innovative medicines that made people a better health. So I wanted
2:07
to work on research and developments since I was in my last years of my
2:14
career. So that's why I look for it. And I've been working for
2:19
this since like two thousand and seven now, so yes, so yes,
2:27
fifteen sixteen years, sixteen years, yes, sixteen sixteen. However, Tom,
2:32
let me clarify for the audience that my regardless I am, I work
2:42
in clinical research. It's not like so related to my work in the Hairsprung
2:49
group, right, it's like something else. It is related because I put
2:53
all my background in the work I do in some way, but it's not
3:00
like I don't. I don't mix all that together, you know. It
3:06
helps me, but it's separate lines, right, Definitely, definitely, yes,
3:12
definitely, So we will move swiftly onto the Hirshbrongs Argentina. And you
3:21
are the founder of HIRSHBRNGS Argentina that was set up in October twenty twenty two?
3:28
Am I right in saying that? Yeah? Correct? So what made
3:34
you want to start up the foundation? Well, the aim of the group
3:45
was to provide information of quality the families and this this was related to my
3:53
personal history because my son Agusto, my son Schologusto, passed away at one
4:02
year and one month old in twenty fourteen due to an undiagnosed enterocolitis, which
4:12
I over the years I learned that it was a quite common event and complication
4:19
for here from patients and well. At first I started to think, how
4:28
could I help people and families in this way to let to know to understand
4:33
that this was an event that they have to pay attention to and also to
4:38
cascade to healthcare professionals in any urgency emergency room for example. So that was
4:45
my first approach to help, like building something to prevent this event that it's
4:54
mortal. So in that way I went to the center of reference of my
5:00
country with this, the hospital Garaham Here and I build together with them another
5:09
card that is designed for patients and families to go to any emergency room and
5:16
have all the step by step to manage this interroocolitis event. How they should
5:24
manage this event. Because the thing is that introcolitis is often very confused with
5:30
a common diarrhea, but our patients it's not a common diarrhea, they have
5:36
to suspect introrocolitis. So in that sense, I started my group with this
5:44
objective. This was like short steps, you know, first I started with
5:47
this, then some families. I came across several families, and I had
5:55
the aim and the objective to found the group and do something greater and better
6:00
for the families. You know, definitely, definitely, well, it seems
6:04
to be very much working from from the especially from the Instagram stories that you
6:12
share on and just so you know where to find Hirshbrung's Argentina, It's at
6:19
Hirshbrung's Underscore Argentina on Instagram and there are some some fantastic and fascinating stories on
6:29
there. I was reading a few just through this week, stories that I
6:35
or conditions that I haven't come across a great deal. And I know we
6:40
were talking, we'll have talked previously about conditions associated with Hirshbrung's disease, entricolitis
6:48
obviously being one, but Hirshbrung's has had links to conditions such as autism and
7:00
crones and there was one other that we were talking about before that it's completely
7:03
gone out of my head. Can you remember, Yeah, inflammatory bowel disease.
7:09
That's the one, that's the one. Yeah. So Hirshbrung's as a
7:15
condition doesn't necessarily only have only if you have hirshpungs. Doesn't necessarily mean that
7:24
you only just have hirshpungs. It can be can be linked and has shown
7:28
links to other conditions as well. But I want to talk, if that's
7:32
agay, just more about about the charity. Because you have done a relatively
7:40
short space of time, you have done an awful lot of work with the
7:44
charity. What's one of the things that you're most proud of? Wow,
7:54
the group that we've created. We have a very big group throughout Latin America
8:01
for or more than fifty families that are involved. So I've started the group.
8:09
I say that I've studied the group, but the moms and dads did
8:13
the rest, you know, because I was like kind of a link between
8:18
them. But they are the ones who give words of challenge and words of
8:24
support to each other. So I'm very proud of that like chain of good
8:33
of good intentions to each other and all the empathy it's created towards this group.
8:39
So that's very good. I am very proud of creating this and of
8:45
the of this taking the best of each person, you know, because all
8:50
the moms and dads there want to help each other. That's fantastic. Yeah,
8:56
absolutely fantastic. And I'm sure we're looking to create something very similar over
9:05
here as well. We've we've been talking recently about about setting something up in
9:11
this country as well, and if we can have you any kind of the
9:16
success that you've had across South America, that that would be fantastic. Talked
9:24
as well about see what you're what, you're proud of, what you're really
9:30
pleased without with the charity. Looking into the future, where do you see
9:37
the charity heading. Would it be sort of more of more of the same,
9:43
just getting more people in and more people talking about Hershbruns or is there
9:48
a specific goal in mind? Yeah, very good question. My my specific
9:54
goal for the future now that the group is billed, you know, everyone
10:00
or mostly everyone knows that we are there and they can join whenever they want,
10:03
so it's like that's moving forward, moving I mean, my goal for
10:11
next year would be to do some kind of event to make specialists aware more
10:20
aware of this condition, you know, because there are still a lot of
10:24
challenges in the diagnosis, at least speaking about Latin America, mainly in Argentina,
10:31
because you know, I work very close with our other charity organizations from
10:37
all Latin America, in Chile, in Colombia, in Mexico, there are
10:43
there's another like founder of another group that does pretty much the same that I
10:50
do here. So I don't get involved in all the stuff of those countries,
10:58
but we work together. But speaking about Argentina specifically, we foresee a
11:05
lot of challenges in the diagnosis, you know, in the biopsy and that
11:11
that biopsy has to be taken by qualified surgeons, and because sometimes the biopsy
11:18
is not as good as surgeons would like to be, and the pathologists don't
11:24
like the biopsy. So there's a lot going on there and there's a lot
11:28
to improve or to make aware for health care providers, you know, surgeons,
11:37
pediatricians, pediatricians in general that are not very aware and familiar with the
11:41
conditions. Now we speak with surgeons and they are very aware, but when
11:48
we speak with other pediatricians, they are not so much aware of this condition,
11:54
and the same happens with pediatric nurses. We would like to do any
12:00
and to made them aware of how colostomis and ilostomies are managed, because there's
12:09
a lot to do there in that aspect. So basically that is rain for
12:16
the next years awareness towards healthcare providers. Definitely fantastic. That sounds very,
12:24
very worthwhile. And just on the Instagram page, as you said, Hirshbrung
12:30
underscore Argentina a lot of the posts, if not, I think all the
12:35
posts are in Spanish? Am I right in saying that? Yeah, yeah,
12:39
correct, But you can just again, most people might already know this,
12:46
It might just be me finding stuff out on my own. But if
12:48
you do, click on any of the posts and you can just click see
12:54
translation and it will translate it to your your nation's language. So if you,
13:05
like me, don't know a great deal of Spanish, can't read Spanish,
13:07
can't speak Spanish, then don't be afraid of that. Just click the
13:13
c translation and you'll be able to see all of the posts on there.
13:18
And moving on to that, you are of course bilingual as well, so
13:24
you can speak Spanish and English. And you have done which is the other
13:28
thing I want to touch on your seminars that you have done, that we've
13:33
spoken about previously to do with hirshprungs. They're in Spanish, is that correct?
13:43
Yeah, we work in Spanish mainly, and also we are aware that
13:48
there's a big organization in the US that does some similar work. I'm not
13:54
sure if they also do seminars in the web, like virtual, but that's
14:01
why mainly I do it in Spanish and mainly here. The all the seminars
14:07
we provide, most of them were leaded by surgeons, gis, pediatricians,
14:13
nurses. So despite I speak English not so well but I speak, we
14:20
don't have I cannot. I don't feel comfortable with asking a healthcare provider here
14:28
to speak in English. You know. That's why we are so far working
14:35
in Spanish. But maybe we can do something else. What are you?
14:39
What do you suggest? Well, I was just gonna say, I think
14:43
I think you're English. Is absolutely great. I saw that you because you
14:50
do have a qualification in English from Cambridge University. Is that correct? Yes?
14:58
Yes, so, yeah, exactly, So you're English is absolutely fine.
15:05
Thank you. But another another part that I just want to touch on
15:11
is your involvement in a day that's coming up fairly soon at the end of
15:20
this month. In Rare Disease Day usually takes place on the twenty eighth of
15:26
February on a non leap year, but this year, being a leap year,
15:31
takes place on the twenty ninth. What if anything it was created in
15:37
two thousand and eight, What if anything are you doing as a charity for
15:46
Rare Disease Day? I'm sorry I missed the question. We's s right?
15:56
What are you are you doing? Are you planning anything for Yeah? I'm
16:02
sorry, yes, yes, John, We specifically we are planning for for
16:07
that date an event. It's a local event and virtual that it's been done
16:14
together with a psychologist from the group, which is also a mom of a
16:18
Harshburne. This is patient that it's intended for for moms and families for the
16:26
school involvement and inclusion at school, and and we prepare a lot of materials
16:30
for families to have and to lead all the interactions with all the school members
16:40
and with families that are like the companions of our of the team the team
16:48
groups for for the school for our patients. You know that was that's that
16:53
would be our event for that date. Fantastic And and where can people find
17:00
because a virtual as you said where can people find this? The event is
17:06
virtual, it would be transmitted through soon and it's free. It's free and
17:11
it would be in Spanish, and they can find it both in our in
17:15
our Instagram page, we have all the data about this and also it is
17:21
posted in the Rare Day page, so we have like that visibility that Rare
17:30
Disease Official gave us to publish that event also in the Rare Disease Day twenty
17:37
twenty four in their web. Fantastic, absolutely fantastic. Yes, I know
17:44
that they, the people that run the Rare Disease Day website, Instagram and
17:51
all the social media do a fantastic job. And obviously this year is going
17:56
to be I don't know whether more special it's pretend actually the word, but
18:02
with Rare Disease Day falling on officially the twenty ninth of February, being a
18:08
leap year, obviously it only comes around once every four years, so definitely
18:15
a special one. Definitely a special one this year. With regards to Hirshbrungs.
18:21
I know we were talking before about other conditions associated with Hirshbrungs and I
18:32
want to talk as well about food allergies that we were talking a little bit
18:38
just before we started this and what sort of because you've done a little bit
18:48
or seen a little bit of research in this, what have you found about
18:57
food allergies in terms of hirshprungs and what might be I don't want to say
19:06
a cause, but what might there be in association with food allergies and hirshprungs.
19:17
Yes, and I see very frequently in the group that after the surgery,
19:23
on the first month after surgery, most of the children are not allergy
19:30
but they don't have food allergy on that stage typically, but they are lactose
19:36
intolerant. Most of them are lactose intolerance. So the milk and the food
19:41
should be arranged in that sense to cover and to avoid any intolerance also throughout
19:49
the years. And it's all, it's all case by case. You know,
19:53
every child with hershman is very different from each other. Some have a
20:00
great living and they don't have any event or any intolerance, and others throughout
20:07
the years start struggling with food allergies for example, or for food with food
20:15
intolerances. So my approach or not my approje because I'm not a physician,
20:22
but my recommendation for families is to lead the interactions between the surgeons and the
20:30
gas trainth theologists and the nutritionists. They have to build a group of specialists
20:37
that are very aware of familiar of hurgeproom. They should gather information, updated
20:44
information. There are a lot of publications of knapshan and there's a lot to
20:48
read on these days in these aspects. So the group that treats our children
20:55
should be very engaged in reading and finding the best approach for these children.
21:02
And also to take into account that there's a lot of immune mediated reactions in
21:10
the food and that that it is currently being discovered that here frem has a
21:15
lot of immuni mediated microbiome issues. That has to be considered when we build
21:23
a treatment or when if we try to find if there's something else rather than
21:30
Okay, he's intolerant or he has a food allergy because of hear from now,
21:34
we we have to see if something else is going on, if there's
21:38
another commorbidity that we are not thinking about. That would be my recommendation.
21:45
I don't know if it's clear enough or it's too long. Yeah, yeah,
21:49
no, definitely definitely, Yeah, I just find a lot of this
21:55
fascinating really because when I what I was going through the very early stage of
22:03
Hirshbrungs, We're talking sort of thirty years ago, when things like food allergies
22:11
were never really discussed. The Internet wasn't really a thing, so you couldn't
22:18
you couldn't find a lot of this stuff out. So I just and that's
22:22
why I'm so grateful to be able to speak with you and speak with several
22:27
other people so that we can share experiences and also know a lot more.
22:37
And there is a lot of research still going into Hirshbrungs. The piece that
22:44
we talked about with them just off air a few moments ago, there was
22:51
a piece of research done in April twenty twenty three, so there's still a
22:56
lot of research going into Hirshbrungs at a very high level. So yeah,
23:02
now I'm I'm incredibly grateful for all of that, and obviously for all the
23:06
work that you do in publicizing as well. And I want to talk as
23:12
well on and sort of jumping jumping around a bit, but jumping back towards
23:18
the Instagram page, the Hurt Springs Argentina Instagram page, and there are a
23:25
lot of a lot of really fascinating stories on there. Quite there's a lot
23:37
of uplifting stories, a lot of people who who've overcome a lot, but
23:40
there's a lot from a medical point of view as well. Do those stories
23:45
come from your your group or do people send them to you? How?
23:49
How does that work? Yes, tib Gully and the moms and dads there
23:56
are in our in our WhatsApp group that at first joined because they found the
24:04
group through Instagram. They offer to share their their story. I have another
24:14
They come from different sources, you know. I have a very nice story
24:18
for a family which is not from the group, and actually I know them
24:22
because they provided their story, but they are not actually part of the of
24:27
the WhatsApp of the month's What's upp Chat? And this story came through a
24:34
gastrenterologist with treating one of the of the boys. She's treating the boy and
24:44
she told me, she wrote to me and told me, oh, what
24:47
a nice work you do. I have a patient of my usual practice that
24:52
has been recovering from hairspring his he's very well now he has been operated.
25:00
So I can't touch base with her mom and find out if she would like
25:03
to share her story. So that's how this story came to me, and
25:10
they even managed to send a video, so it was very nice to have
25:15
that also, so different sources. That's fantastic, that's really really good.
25:21
And again I encourage people really to to read some of those stories because they
25:26
are they are fascinating from a medical point of view. Several things that are
25:33
several stories that I've read on there conditions that I didn't know were associated with
25:37
Hirshbrun's necessarily, but I do, I do encourage people to to go and
25:45
seek those out because it can be with it being a rare condition, it
25:52
can feel potentially quite isolating, I would imagine if you have a child with
26:00
Hirshbrun's. So definitely feel free to join as many Hirshbrung's groups as possible.
26:11
I know you've done a little bit of work with oh the name name forgets
26:18
me Hirshbrung's in Australia and have shared a little bit with the Facebook group there,
26:29
so definitely, yes, definitely seek those out. Definitely well worth your
26:34
time. I want to also about your your story that you've you've written about.
26:45
There's a really good LinkedIn post in February twenty twenty one, where you
26:51
write all about how and why you you've got into Hirshbrung's kind of like you've
26:56
you've explained today and i'd I would suggest for people that want to know to
27:03
know more to seek that out as well. It is on LinkedIn. It's
27:07
on your your LinkedIn page, I believe, and it's it's raising Hirshborm's disease
27:15
awareness through through your story. Dated Februar twenty twenty one. What would you
27:23
say has been I know we talked about the most the proudest moment, but
27:27
what would you say is the most gratifying moment of of running the charity?
27:38
What gives you sort of the most, the most pleasure, the most,
27:44
the least pleasure? Sorry most sorry most? No, no, because we
27:48
had we did have some sad moments. You know, it's it's tough,
27:56
no I have. I am very grateful and I have to mention this tom
28:03
this year now, this year or not. In November twenty twenty three,
28:07
I've met Luciana. Luciana, it's for a friend group. Now it's like
28:15
a sister group of ours that it's the rectal malformation group. We can you
28:22
can find a lot of publications that we shared because we also share a lot
28:27
of challenges on both conditions, so that's why we sometimes share the content,
28:34
you know, and an rectal marformation it's also diagnosed when you are born,
28:42
and also families struggle with colostomis. So we found each other through the web
28:48
as well, and we speak to each other, and it was like magic,
28:55
you know, because she's so enthusiastic to work for the patients and she
29:00
has no egos. She wants to work and do the best for patients as
29:04
me. So we work very well together in raising awareness and raise our potential
29:11
together. So this is great because we share a lot of challenges and also
29:18
the surgeons involving the treatment of both conditions are the same, so there's a
29:25
lot of synergy there to work together. So that's a very nice thing that
29:30
I like to share a highlight from last year. It's fantastic. You mentioned
29:37
some of the challenges as well. Are there any specific challenges that stand out
29:45
through running a charity, any of the difficulties If someone was, for example,
29:52
start running their own charity, what advice would you give them? Okay,
30:00
that you cannot handle all. You have to be very organized, and
30:08
you know, many people like kind of seem to get involved and tell oh,
30:14
yeah, why how nice, that's beautiful. But then at the end
30:18
of the day, you cannot do progress and with all the people that at
30:26
the first side they raise their hands. So you have to be very careful
30:30
on all the things on which you get involved and on which you don't,
30:36
because we won't you won't be able to finish all what you start, and
30:41
to set very careful which would be the people that you like, you like
30:45
to interact and move forward with some special needs or not, because you cannot
30:55
do everything. I don't know if I'm being clear about that. Definitely that
31:00
that makes absolute sense that I think sometimes delegation is really really important, but
31:08
it's making sure to delegate to the right people and the people that are going
31:14
to to do the best. I know we've spoken briefly as well about what's
31:26
next for the charity. I want to talk also about what's next for you
31:33
personally professionally, what what what do you see Do you see more of the
31:40
the trying to build up the the charity or the other aspects that you want
31:48
to still achieve in your your career. I'm very comfort zone with what I
31:56
have achieved in my career. Of course, I'm always open to challenges in
32:00
my career, so I'm always seeking new challenges. But now my it's like
32:12
it moves my heart, you know, the the charity and the heart from
32:16
group moves moves my heart. So that's kind of my priority on these days,
32:22
apart from all my stuff, you know, family, friends, and
32:30
my job of course, because at the end of the day, I have
32:35
to to be to have all that in order to be effective in the charity
32:40
group. Fantastic, Yes, very very busy, very busy, I would
32:45
imagine, But yes, no, that sounds absolutely fantastic. And yeah,
32:53
I'd just like to say as well, on behalf of myself that I'm very
32:58
very pleased to have you in our small trio between you, me and Louisa.
33:06
It's been absolutely fantastic meeting both of you, talking through different ideas that
33:13
we have, and we have plenty as well, hopefully coming up in the
33:16
near future, starting off with some various other podcast episodes that we have and
33:24
hopefully we can share those with you in the fullness of time. But yes,
33:30
is there anything else you'd like to add? No, John, I'm
33:37
also very grateful of knowing you. It's always very nice to know elder people,
33:46
adults, young adults as you that are involved with hairs Brum. So
33:52
I'm very grateful as well to meet you both. I like how you called
33:58
me young. I'll take that. Yeah, you are young, I'll take
34:02
young. I'll take that. Thank you ever so much. Thank you very
34:07
much, Carlo, Thank you, Tom. Thank you for listening to the
34:15
podcast. Find us on Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous
34:22
episodes on Spotify by searching Tom's Hirshbrun's podcast