My Awareness Projects


This website has been online since the end of 2014, and a lot of very positive things happened until then. And I want you to be part of it!

I find it to important to use my personal story to raise awareness for Ehlers-Danlos syndrome and its comorbidities and I believe, every voice counts!

Writing is my main coping strategy, and I handle my emotions and negative experiences through it. I also try to actively change things to the better in Germany and publish essays and articles on different blogs in German and English.

I hope this page gives you insight into my life and I want to encourage all of you to move something or someone in your unique way.

 

2014

In the end of 2014, this website,

my Facebook site:

https://www.facebook.com/instabilehalswirbelsaeule

and my YouTube channel:

https://www.youtube.com/user/EDSandCCIawareness

were created.

2015

In March, my first little German article „Wenn der Kopf zur Last wird“ was published in the magazine „Schattauer Rheuma und Arthritis“:

http://www.instabile-halswirbelsaeule.de/?p=977

Also in March, another German article „Das Ehlers-Danlos-Syndrom vom hypermobilen Typ und die schwerwiegende Komplikation der cervicalen Instabilitäten“ was published in the magazine of the German EDS organization „EDS Initiative“:

http://www.instabile-halswirbelsaeule.de/?p=1016

In May, my first English essay was published along with a lot of other people’s EDS stories in the book:
„Our Stories of Strength – Living with Ehlers-Danlos Syndrome“:

http://www.amazon.com/Our-Stories-Strength-Ehlers-Danlos-Syndrome/dp/0996302905/ref=sr_1_1?ie=UTF8&qid=1439906748&sr=8-1&keywords=our+stories+of+strength

Again in May, another German article about cervical spine instabilities and the problems to diagnose them was published in the magazine „MTA Dialog“ (only available for members of MTA Dialog)

In July, I was able to share my essay „Why I Wish I Opened Up to the Flight Attendant About My Invisible Illness“ with „The Mighty“:

http://themighty.com/2015/07/why-i-wish-i-opened-up-to-the-flight-attendant-about-my-invisible-illness/

A first interview about my life was published in a German magazine called „Focus“ in July:

http://www.focus.de/gesundheit/ratgeber/seltenekrankheiten/serie-seltene-krankheiten-ehlers-danlos-syndrom-wenn-der-hals-zu-schwach-ist-um-den-kopf-zu-tragen_id_4741181.html

In August, my first TV interview was broadcasted by Neumarkt TV

In September, I shared an essay about dysautonomia with the German blog „Potsplatzblog“:

https://potsplatzblog.wordpress.com/karina/

„A long journey to diagnosis“ was published on the website of „Suffering the Silence“ in September:

http://sufferingthesilence.com/karina/#sthash.Cwp8APtp.YGxz9wH4.dpbs

„Do I deserve to be loved? Relationship with Ehlers-Danlos Syndrome“ published by „My Invisible Life“ in September (website not active anymore)

Also, „The Zippy Zebra“ shared one of my essays „how people look at you if you are using a wheelchair without being paralyzed“ in September:

http://thezippyzebra.com/?p=1259

In October, I wrote another essay for „My Invisible Life“ with the title: „What does it cost me to pretend to be normal“ (website not active anymore).

In November, I was very proud to announce that I published my first scientific-like article with the title: „Das Ehlers-Danlos-Syndrom mit Schwerpunkt auf dem hypermobilen Typ und dessen Begleiterkrankungen – eine Literaturübersicht“ in the „Journal für Mineralstoffwechsel“:

http://www.kup.at/kup/pdf/13195.pdf

Another article appeared in the German MTA Dialog with the title: „Das Ehlers-Danlos-Syndrom“ in December (not publicly available)

„Patient Worthy“ shared an essay called „10 things EDS has taught me“ in December:

http://patientworthy.com/2015/12/09/ehlers-danlos-syndrom-gelernt-hat/

2016

„What You See and Don’t See About the Woman in This Photo“ is my second essay I shared with „The Mighty“

http://themighty.com/2016/01/what-you-see-and-dont-see-about-the-woman-in-this-photo/

In January I published the first part of my personal story as a book.

In February something amazing happened. Shemar Moore helped me to raise awareness for EDS and nominated us as “Baby Girls of the Day”. He enabled us to reach a huge audience.
https://www.facebook.com/shemarmoore/photos/a.257957957659103.61084.257950210993211/964927466962145/?type=3&theater

 

Additionally in February, I created a new project. A website where all people with chronic illnesses can share their stories. It is the first German page of its kind.

http://www.holy-shit-i-am-sick.de

Facebook

https://www.facebook.com/1000GeschichtenchronischkrankerMenschen

Another little piece written by me the Mighty published in February:

http://themighty.com/2016/02/to-myself-when-i-struggled-to-accept-my-ehlers-danlos-syndrome-diagnosis/

 

In March, my first book was available as print book (paperback and hardcover) as well as a new ebook format.

https://tredition.de/autoren/karina-sturm-16944/wenn-der-kopf-zur-last-wird-paperback-80148/

http://www.amazon.de/Wenn-Kopf-zur-Last-wird/dp/3734511410/ref=pd_ecc_rvi_1

or

http://www.amazon.com/gp/product/3734511410?keywords=wenn%20der%20kopf%20zur%20last%20wird&qid=1458069475&ref_=sr_1_1_twi_pap_2&sr=8-1

In April, I was invited to write a little guest blog about my life and my new project “Holy Shit I am Sick”  for Nora, who talks about depression, anxiety and borderline.

Projekt zur Entstigmatisierung: Holy Shit I am Sick

In May, I was allowed to share my new project “Holy Shit I am Sick” with an German organization for rare anemias. (German article)

http://seltene-anaemien-deutschland.de/blog/128-holy-shit-i-am-sick-karina

Another article, in which I processed a negative experience with one of my doctors, was shared by the Mighty in May: 

“When a Doctor told me not to think about my Ehlers-Danlos Syndrome so much.”

http://themighty.com/2016/05/ehlers-danlos-syndrome-and-finding-understanding-doctors/

 

Right to the end of  EDS Awareness Month May I was able to publish another one of my articles with Patientworthy: “Dear Ehlers-Danlos Syndrome – a letter from your host”.

http://patientworthy.com/2016/05/19/dear-ehlers-danlos-syndrome-letter-host/?utm_campaign=coschedule&utm_source=facebook_page&utm_medium=Patient%20Worthy&utm_content=Dear%20Ehlers-Danlos%20Syndrome:%20A%20Letter%20From%20Your%20Host

In June, the Mighty published another one of my articles: When a man at the airport noticed how much pain I was in.

http://themighty.com/2016/06/when-a-how-are-you-doing-today-is-so-much-more-than-just-a-phrase/

Here’s What I Would Say To The Patients Who Are Being Told Their Disease Is “Not Real”

for Global Genes in July:

https://globalgenes.org/raredaily/heres-what-i-would-say-to-the-patients-who-are-being-told-their-disease-is-not-real/

My friend Kendra in July published my article HOW DOES IT FEEL TO BE A SECOND CLASS PERSON? in her online magazine “strength/flexibility/health/EDS” :

http://strengthflexibilityhealtheds.com/2016/05/31/second-class-person/

In August, my first German podcast was created. I am mainly talking about my life with several chronic illnesses:

http://www.holy-shit-i-am-sick.de/podcast-2/

August:

I wrote a guest blog for my friend Denise. An open letter to myself right before my EDS diagnosis with information I wish I would have had back then.

http://www.lifestyle-ab40.de/gastbloggerin-karina-spricht-mir-aus-dem-herzen/

September:

Here is a guest blog for my friend Kendra from EDS Wellness. It is about how to successfully travel from Europe the US to see my specialists:

http://edswellness.org/index.php/2016/09/28/tips-traveling-europe-united-states-see-ehlers-danlos-syndrome-specialists/

 

Another guest blog for Kendra and EDS Wellness, this one is about Tenascin XB and EDS:

http://edswellness.org/index.php/2016/09/29/tenascin-x-tenx-ehlers-danlos-syndrome/

 

October:

My struggle to feel deserving of love as a woman with chronic illness für The Mighty

https://themighty.com/2016/10/not-feeling-deserving-of-love-as-someone-with-ehlers-danlos-syndrome/

 

November:

Letter to the editor “Diagnosen sammeln wie Briefmarken” in the German newspaper FAZ:

http://fazarchiv.faz.net/fazSearch/index/searchForm?q=Diagnosen+sammeln+wie+Briefmarken&search_in=&timePeriod=timeFilter&timeFilter=&DT_from=&DT_to=&KO=&crxdefs=&NN=&CO%2C1E=&CN=&BC=&submitSearch=Suchen&maxHits=&sorting=&toggleFilter=&dosearch=new#hitlist

 

December: 

01.12.2016

German Newspaper: Neumarkter Tagblatt, interview with Christoph Glötzner, “Sein Motto lautet: Niemals aufgeben!”

http://www.mittelbayerische.de/region/neumarkt/gemeinden/neumarkt/ski-ass-christoph-hat-nur-ein-bein-22797-art1459850.html

 

2017

 

February

 

“When I was challenged to share how I really feel about my EDS” for “The Mighty”

https://themighty.com/2017/02/how-it-feels-to-have-ehlers-danlos-syndrome/

March:

“Warum darf ich nicht einfach liegen bleiben” for “Müttermagazin” (German)

http://muettermagazin.com/warum-darf-ich-nicht-einfach-liegen-bleiben/

April: 

My life with EDS featured in German newspaper (“Auf einen Blick”)

http://www.holy-shit-i-am-sick.de/das-ehlers-danlos-syndrom-in-der-auf-einen-blick/

June:

Finding the humor in my husband buying me diapers – The Mighty

https://themighty.com/2017/06/husband-buying-diapers-for-wife-chronic-bladder-condition/

Articles about my life with EDS in “die neue Post” and “Fernsehwoche”

 

EDS on local TV

https://www.facebook.com/neumarkttv/videos/1718784194813459/

 

August:

EDS in the German newspaper “Stern”

http://www.stern.de/gesundheit/ehlers-danlos-syndrom–raetselhafte-symptome–zwoelf-jahre-fehldiagnosen-7589668.html

 

September:

“So tickt… Karina Sturm” – Interview with Rehacare

https://www.rehacare.de/cgi-bin/md_rehacare/lib/pub/tt.cgi/So_tickt_Karina_Sturm.html?oid=46505&lang=1&ticket=g_u_e_s_t

German article about mast cell activation

https://www.mta-dialog.de/artikel/das-mastzellaktivierungssyndrom.html

 

Oktober:

 

My second book is available online: Wenn der Kopf zur Last wird – Mein überbewegliches Leben