neoskosmos.com
Open in
urlscan Pro
2606:4700:20::681a:71b
Public Scan
Submitted URL: http://ow.ly/bwPB50MwF73
Effective URL: https://neoskosmos.com/en/2023/01/17/news/community/jordan-is-only-24-but-has-been-fighting-a-rare-disease-for-years/
Submission: On January 23 via manual from AU — Scanned from DE
Effective URL: https://neoskosmos.com/en/2023/01/17/news/community/jordan-is-only-24-but-has-been-fighting-a-rare-disease-for-years/
Submission: On January 23 via manual from AU — Scanned from DE
Form analysis 3 forms found in the DOM
POST https://neoskosmos.com/en/2023/01/17/news/community/jordan-is-only-24-but-has-been-fighting-a-rare-disease-for-years/
<form id="rcp_login_form" class="rcp_form" method="POST" action="https://neoskosmos.com/en/2023/01/17/news/community/jordan-is-only-24-but-has-been-fighting-a-rare-disease-for-years/">
<fieldset class="rcp_login_data">
<p>
<label for="rcp_user_login">Username or Email</label>
<input name="rcp_user_login" id="rcp_user_login" class="required" type="text">
</p>
<p>
<label for="rcp_user_pass">Password</label>
<input name="rcp_user_pass" id="rcp_user_pass" class="required" type="password">
</p>
<p>
<label for="googleotp">Google Authenticator Code</label>
<input type="text" name="googleotp" id="googleotp" class="rcp-input" value="" size="20" style="ime-mode: inactive;">
</p>
<p>
<input type="checkbox" name="rcp_user_remember" id="rcp_user_remember" value="1">
<label for="rcp_user_remember">Remember me</label>
</p>
<p class="rcp_lost_password"><a href="/en/2023/01/17/news/community/jordan-is-only-24-but-has-been-fighting-a-rare-disease-for-years/?rcp_action=lostpassword">Lost your password?</a></p>
<p>
<input type="hidden" name="rcp_action" value="login">
<input type="hidden" name="rcp_redirect" value="https://neoskosmos.com/en/2023/01/17/news/community/jordan-is-only-24-but-has-been-fighting-a-rare-disease-for-years/">
<input type="hidden" name="rcp_login_nonce" value="c5227540e3">
<input id="rcp_login_submit" class="rcp-button" type="submit" value="Login">
</p>
</fieldset>
<script type="text/javascript">
try {
document.getElementById('user_email').setAttribute('autocomplete', 'off');
} catch (e) {}
</script>
</form>GET https://neoskosmos.com/en/
<form class="form--nakedInputs" role="search" method="get" action="https://neoskosmos.com/en/">
<label for="searchField"><span class="screenReaderText">Search</span></label>
<input type="text" name="s" id="searchField" placeholder="Search">
<button class="btn icon-search"><span class="screenReaderText">Search</span></button>
</form>POST /en/2023/01/17/news/community/jordan-is-only-24-but-has-been-fighting-a-rare-disease-for-years/#gf_772494645
<form method="post" enctype="multipart/form-data" target="gform_ajax_frame_772494645" id="gform_772494645" action="/en/2023/01/17/news/community/jordan-is-only-24-but-has-been-fighting-a-rare-disease-for-years/#gf_772494645">
<div class="gform_body gform-body">
<ul id="gform_fields_772494645" class="gform_fields top_label form_sublabel_below description_below">
<li id="field_1_3" class="gfield hide-label gfield_contains_required field_sublabel_below field_description_below gfield_visibility_visible" data-js-reload="field_1_3"><label class="gfield_label" for="input_772494645_3">Your Email<span
class="gfield_required"><span class="gfield_required gfield_required_asterisk">*</span></span></label>
<div class="ginput_container ginput_container_email">
<input name="input_3" id="input_772494645_3" type="text" value="" class="medium" tabindex="506220" placeholder="Your Email" aria-required="true" aria-invalid="false">
</div>
</li>
<li id="field_1_1" class="gfield half hide-label gfield_contains_required field_sublabel_below field_description_below gfield_visibility_visible" data-js-reload="field_1_1"><label class="gfield_label" for="input_772494645_1">First Name<span
class="gfield_required"><span class="gfield_required gfield_required_asterisk">*</span></span></label>
<div class="ginput_container ginput_container_text"><input name="input_1" id="input_772494645_1" type="text" value="" class="medium" tabindex="506221" placeholder="First Name" aria-required="true" aria-invalid="false"> </div>
</li>
<li id="field_1_8" class="gfield half hide-label gfield_contains_required field_sublabel_below field_description_below gfield_visibility_visible" data-js-reload="field_1_8"><label class="gfield_label" for="input_772494645_8">Last Name<span
class="gfield_required"><span class="gfield_required gfield_required_asterisk">*</span></span></label>
<div class="ginput_container ginput_container_text"><input name="input_8" id="input_772494645_8" type="text" value="" class="medium" tabindex="506222" placeholder="Last Name" aria-required="true" aria-invalid="false"> </div>
</li>
<li id="field_1_5" class="gfield hide-label gfield_contains_required field_sublabel_below field_description_below gfield_visibility_visible" data-js-reload="field_1_5"><label class="gfield_label gfield_label_before_complex">Language
Preference<span class="gfield_required"><span class="gfield_required gfield_required_asterisk">*</span></span></label>
<div class="ginput_container ginput_container_checkbox">
<ul class="gfield_checkbox" id="input_772494645_5">
<li class="gchoice gchoice_1_5_1">
<input class="gfield-choice-input" name="input_5.1" type="checkbox" value="English" checked="checked" id="choice_772494645_1_5_1" tabindex="506223">
<label for="choice_772494645_1_5_1" id="label_772494645_1_5_1">English edition</label>
</li>
<li class="gchoice gchoice_1_5_2">
<input class="gfield-choice-input" name="input_5.2" type="checkbox" value="Greek" id="choice_772494645_1_5_2" tabindex="506224">
<label for="choice_772494645_1_5_2" id="label_772494645_1_5_2">Greek edition</label>
</li>
</ul>
</div>
</li>
<li id="field_1_9" class="gfield gform_validation_container field_sublabel_below field_description_below gfield_visibility_visible" data-js-reload="field_1_9"><label class="gfield_label" for="input_772494645_9">Name</label>
<div class="ginput_container"><input name="input_9" id="input_772494645_9" type="text" value=""></div>
<div class="gfield_description" id="gfield_description_1_9">This field is for validation purposes and should be left unchanged.</div>
</li>
</ul>
</div>
<div class="gform_footer top_label"> <input type="submit" id="gform_submit_button_772494645" class="gform_button button" value="Subscribe" tabindex="506225"
onclick="if(window["gf_submitting_772494645"]){return false;} window["gf_submitting_772494645"]=true; "
onkeypress="if( event.keyCode == 13 ){ if(window["gf_submitting_772494645"]){return false;} window["gf_submitting_772494645"]=true; jQuery("#gform_772494645").trigger("submit",[true]); }"> <input
type="hidden" name="gform_ajax" value="form_id=1&title=&description=&tabindex=506220">
<input type="hidden" class="gform_hidden" name="is_submit_1" value="1">
<input type="hidden" class="gform_hidden" name="gform_submit" value="1">
<input type="hidden" class="gform_hidden" name="gform_unique_id" value="">
<input type="hidden" class="gform_hidden" name="state_1" value="WyJbXSIsIjVkODQyNTUzOWFhMzk1ZDkxMzcyM2JjNjJkZWY1MDQ0Il0=">
<input type="hidden" class="gform_hidden" name="gform_target_page_number_1" id="gform_target_page_number_772494645_1" value="0">
<input type="hidden" class="gform_hidden" name="gform_source_page_number_1" id="gform_source_page_number_772494645_1" value="1">
<input type="hidden" name="gform_random_id" value="772494645"><input type="hidden" name="gform_field_values" value="">
</div>
</form>Text Content
WE VALUE YOUR PRIVACY
We and our partners store and/or access information on a device, such as cookies
and process personal data, such as unique identifiers and standard information
sent by a device for personalised ads and content, ad and content measurement,
and audience insights, as well as to develop and improve products. With your
permission we and our partners may use precise geolocation data and
identification through device scanning. You may click to consent to our and our
partners’ processing as described above. Alternatively you may access more
detailed information and change your preferences before consenting or to refuse
consenting. Please note that some processing of your personal data may not
require your consent, but you have a right to object to such processing. Your
preferences will apply to this website only. You can change your preferences at
any time by returning to this site or visit our privacy policy.
MORE OPTIONSAGREE
* Main navigation
* Login
* ΕΛΕΛ
* ΕλληνικάΕΛ
*
Subscribe Now
ΕλληνικάΕΛ
* News
* Features
* Podcasts
* Life
* Sport
* Dialogue
SUPPORT YOUR
NEOS KOSMOS SUPPORT YOUR NEOS KOSMOS
Subscribe Now Subscribe Read The Paper
LOGIN
Username or Email
Password
Google Authenticator Code
Remember me
Lost your password?
NOT A MEMBER?
Consider a Subscription or register to receive our Newsletters
Main navigation
Search Search
* News
* Features
* Podcasts
* Life
* Sport
* Dialogue
Facebook Twitter: @NeosKosmos Instagram
* Subscribe
* Newsletters
* Contact
* Jobs
* Editorial Guidelines
* Privacy Policy
* Terms of service
© 2009-2023 Ethnic Publications Pty Ltd
ABN 13005 255 087
Advertisement
News / Community
JORDAN IS ONLY 24, BUT HAS BEEN FIGHTING A RARE DISEASE FOR YEARS
“I have always had a passion for science and medicine and becoming a doctor has
always been my dream. Once I am recovered from my transplant, I will be studying
medicine”, Jordan told Neos Kosmos.
Greek Australian Jordan Lambropoulos has undergone 11 surgeries the last 12
months. Photo: Supplied
Kirie Kappas
17 January 2023 5:43pm
Facebook Twitter: @NeosKosmos Instagram
Since she was a little girl, Adelaide woman Jordan Lambropoulos has been
fighting with Crohn’s disease, a bowel condition, that can cause severe
inflammation to a patient’s digestive system.
The obstinate disease, that has been particularly aggressive in Jordan’s case,
has had a major impact on her daily life. However, she refuses to let it define
her.
Keeping up with school has been anything but easy for the 24-year-old, but she
ended up excelling in her final exams.
“Over the years in high school I taught myself most of the curriculum from home
or hospital, staying in touch with teachers via email. I ended up graduating
with a 95.00 ATAR-which will always be my proudest achievement”, Jordan tells
Neos Kosmos.
Jordan’s parents were both born in Australia but has maintained connection to
her Greek heritage. Her paternal grandfather came from Vrina, a village in Ilia,
Western Peloponnese. Photo: Supplied.
Suffering from symptoms since birth, the young Greek Australian had severe mouth
ulcers and swelling in her face, and was incredibly fatigued, experiencing
severe pain and bloating after eating small amounts.
Advertisement
The truth was that something was getting in the way of her growing, but the
doctors simply could not get to the bottom of it.
Her pneumonia at 9 years old, came to shed light on this mystery, finally
leading to her diagnosis of Crohn’s disease.
“As I grew older and my disease progressed to the stage it is now, we realised I
had a rare aggressive and progressive form of the disease. It affects my mouth,
oesophagus, stomach, small intestine, skin, my colostomy, joint, rectum and my
eyes.”
Leaving her suffering from almost daily partial bowel obstructions, a
potentially life-threatening complication of Crohn’s, the 24-year-old had to get
a significant amount of small intestine removed.
“Unlike the large bowel”, she says, “you cannot live without a small bowel.”
“This is the part of my disease that will ultimately limit my life and cause the
decline in my quality of life even further if we are unable to control the
disease”.
With a strictly limited diet, young Jordan’s body has not responded to any
prescribed medication or treatment.
“However, I’m also human and crave normalcy so badly so will often suffer the
consequences of eating whatever I want!”, Jordan told Neos Kosmos.
Her medical team, she recounts, can be lenient with what she can eat, under the
condition that she is getting some form of nutrition, since maintaining her
weight and nourishment is a big struggle.
Following a colostomy – an operation that creates an opening for the colon
(large intestine) through the abdomen, Jordan has a stoma pouch that collects
her body waste.
“Being an ostomate has encouraged me to step out of my comfort zone and embrace
my body for what it is. Sure, having a bag isn’t ideal, but I have no choice in
the matter so might as well embrace it!” Having had 11 surgeries, during the
last 12 months alone, and with conventional therapy being ineffective, Jordan’s
disease would aggressively attack her stoma and the skin surrounding it.
As a result, her body became steroid dependent, leaving the 24-year-old spending
more time in hospital than home.
Cortisone therapy is working in masking her symptoms and can be extremely
draining, both physically and mentally, leaving bone marrow transplant as her
only sustainable treatment option.
Hoping that transplant will be as successful to her as it has been for other
severe refractory autoimmune disease, Jordan is waiting for the green light from
the team in Sydney to get a chance of resetting her immune system.
“It gets hard trying to plan for your future, or to relate to family and friends
when you are so uncertain on whether you have a future. Seeing friends
progressing in life while your life stands still is astronomically
heartbreaking”, Jordan admits, but feels grateful for her support network and
friends who have stood by her side.
Advertisement
“Living on borrowed time really does make you question how you want to be
perceived by others, and really does make you want to hold your loved ones
close-because tomorrow is never guaranteed.”
Becoming a doctor has always been Jordan’s dream. And, if anything, the disease
has given an additional meaning to her passion for science and medicine.
“Once I am recovered from my transplant, I will be studying medicine, in hope to
become a colorectal surgeon eventually. I have such passion for patient advocacy
as well as anatomy and physiology, so feel that this will translate well into a
career as a healthcare provider,” she explained.
Having experienced how ‘exhausting’ it can be explaining a rare condition as a
patient to others she says she wishes “people were better educated on how
serious this illness can be.”
“We wouldn’t be looking at a risky bone marrow transplant as a last resort if
there was a simpler more effective option available.
“The lack of representation and advocacy in the media needs to change so that
those of us living with this disease feel that the public are adequately aware
of just how debilitating it can be.”
Facebook Twitter: @NeosKosmos Instagram
Advertisement
NEWSLETTER
GET THE BEST OF NEOS KOSMOS DELIVERED TO YOUR INBOX
* Your Email*
* First Name*
* Last Name*
* Language Preference*
* English edition
* Greek edition
* Name
This field is for validation purposes and should be left unchanged.
RECEIVE FREE NEOS KOSMOS HIGHLIGHTS FROM OUR EDITORS.
By subscribing you accept our Terms of Service and Privacy Policy.
By subscribing you accept our Terms of Service and Privacy Policy.
Advertisement
Advertisement
Notifications