Janna Linke is a 35-year old mother of two who, whilst registered as a Pharmacist, and having worked in both Hospital and Community pharmacy roles, isn't currently employed in the Pharmacy sector. This is due to ongoing chronic health conditions.
Janna was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) at the age of 33 years, a rare connective tissue disorder.

Janna established the health advocacy brand, Zebra Blends at beginning of 2020, as it became evident to her, in her search for answers to her own health issues, that rare diseases and similarly chronic illnesses are very commonly under researched, under funded, and in turn under diagnosed. Janna hopes to change this via providing patient advocacy services to people experiencing rare disease and chronic illness.

It's hoped via the increases in exposure and awareness of these conditions, the path to diagnosis and treatment will become much  smoother and quicker

Indispensable Episode 8 Invisible Disease | Making Connections

In this episode, Janna discusses HyperMobile Ehlers-Danlos Syndrome or hEDS, chronic pain and chronic fatigue syndrome and some of the medications used to help with the symptoms. The path to diagnosis for these 'invisible diseases' can be long and frustrating. Janna offers some ways to advocate for yourself and also opportunities to connect with others that may be managing these conditions. "If you can't connect the issues, think connective tissue".

5 Indispensable tips
Engage a general practitioner who is willing and able to learn about your condition if it is not one they are already familiar with. Having a good working relationship with your general practitioner is integral to ensuring appropriate and timely referral to specialists is achieved, thus obtaining accurate diagnosis which in turn leads to more timely and effective treatments being explored and utilised.
Have a good working relationship with your local pharmacist. They are able and very willing to assist in advocacy but also in ensuring your medication usage is optimised at all times.
If you have a rare chronic illness, join support groups. These can be tremendous for building a support network of people who know exactly what it is like to be living with the condition you are. But also, most importantly a lot of the time there will be people who are more ‘experienced’ with the condition, disease or syndrome and able to guide you in your journey.
There are no silly questions - never be afraid to ask for further explanation, information or evidence from your healthcare providers.
Collaboration is the KEY. Collaboration with healthcare practitioners, both medical and allied health, carers, support workers and fellow patients.Your multidisciplinary team of practitioners if you have a chronic or rare condition will be big. Make sure everyone is informed and remains in the loop, about any key changes to medications or treatment. This will make transitions of any kind easier for all involved.

 

You can connect with Janna here:

Instagram: @zebrablends

FB: Zebra Blends

Web: www.zebrablends.com.au

Email: janna@zebrablends.com.au

 

Additional Links:

Rare Voices Australia (RVA)

https://www.rarevoices.org.au/

The Ehlers-Danlos Society

https://www.ehlers-danlos.com/

Emerge Australia

https://www.emerge.org.au/

Unrest - Documentary Film available to watch on Netflix

https://www.unrest.film/

Pain Australia

https://www.painaustralia.org.au/

Low Dose Naltrexone (LDN)

https://www.customcompounding.com.au/wp-content/uploads/2017/11/Low-Dose-Naltrexone-Medicine-Information.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

Janna Linke is a 35-year old mother of two who, whilst registered as a Pharmacist, and having worked in both Hospital and Community pharmacy roles, isn't currently employed in the Pharmacy sector. This is due to ongoing chronic health conditions. Janna was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) at the age of 33 years, a rare connective tissue disorder.
Janna established the health advocacy brand, Zebra Blends at beginning of 2020, as it became evident to her, in her search for answers to her own health issues, that rare diseases and similarly chronic illnesses are very commonly under researched, under funded, and in turn under diagnosed.&nbsp;Janna hopes to change this via providing patient advocacy services to people experiencing rare disease and chronic illness.
It's hoped via the increases in exposure and awareness of these conditions, the path to diagnosis and treatment will become much&nbsp; smoother and quicker
Indispensable Episode 8 Invisible Disease | Making Connections
In this episode, Janna discusses HyperMobile Ehlers-Danlos Syndrome or hEDS, chronic pain and chronic fatigue syndrome and some of the medications used to help with the symptoms. The path to diagnosis for these 'invisible diseases' can be long and frustrating. Janna offers some ways to advocate for yourself and also opportunities to connect with others that may be managing these conditions. "If you can't connect the issues, think connective tissue".
5 Indispensable tips
<ol>
<li>Engage a general practitioner who is willing and able to learn about your condition if it is not one they are already familiar with. Having a good working relationship with your general practitioner is integral to ensuring appropriate and timely referral to specialists is achieved, thus obtaining accurate diagnosis which in turn leads to more timely and effective treatments being explored and utilised.</li>
<li>Have a good working relationship with your local pharmacist. They are able and very willing to assist in advocacy but also in ensuring your medication usage is optimised at all times.</li>
<li>If you have a rare chronic illness, join support groups. These can be tremendous for building a support network of people who know exactly what it is like to be living with the condition you are. But also, most importantly a lot of the time there will be people who are more &lsquo;experienced&rsquo; with the condition, disease or syndrome and able to guide you in your journey.</li>
<li>There are no silly questions - never be afraid to ask for further explanation, information or evidence from your healthcare providers.</li>
<li>Collaboration is the KEY. Collaboration with healthcare practitioners, both medical and allied health, carers, support workers and fellow patients.Your multidisciplinary team of practitioners if you have a chronic or rare condition will be big. Make sure everyone is informed and remains in the loop, about any key changes to medications or treatment. This will make transitions of any kind easier for all involved.</li>
</ol>
&nbsp;
You can connect with Janna here:
Instagram: @zebrablends
FB: Zebra Blends
Web: <a href="http://www.zebrablends.com.au">www.zebrablends.com.au</a>
Email: <a href="mailto:janna@zebrablends.com.au">janna@zebrablends.com.au</a> 
&nbsp;
Additional Links:
Rare Voices Australia (RVA)
<a href="https://www.rarevoices.org.au/">https://www.rarevoices.org.au/</a>
The Ehlers-Danlos Society
<a href="https://www.ehlers-danlos.com/">https://www.ehlers-danlos.com/</a>
Emerge Australia
<a href="https://www.emerge.org.au/">https://www.emerge.org.au/</a>
Unrest - Documentary Film available to watch on Netflix
<a href="https://www.unrest.film/">https://www.unrest.film/</a>
Pain Australia
<a href="https://www.painaustralia.org.au/">https://www.painaustralia.org.au/</a>
Low Dose Naltrexone (LDN)
<a href="https://www.customcompounding.com.au/wp-content/uploads/2017/11/Low-Dose-Naltrexone-Medicine-Information.pdf">https://www.customcompounding.com.au/wp-content/uploads/2017/11/Low-Dose-Naltrexone-Medicine-Information.pdf</a>
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/</a>

Indispensable is for Australians who want to know how to use their medications effectively and improve their health. In each episode, we share medication tips from the experts: pharmacists.

Indispensable is for Australians who want to know how to use their medications effectively and improve their health. In each episode, we share medication tips from the experts: pharmacists.

Indispensable Podcast

Indispensable is for Australians who want to know how to use their medications effectively and improve their health. In each episode, I share medication tips from the experts: pharmacists.

Indispensable is for Australians who want to know how to use their medications effectively and improve their health. In each episode, I share medication tips from the experts: pharmacists.

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