Meet e-patient Birgit

Written by Silja on 5 January 2012 in epatients - No comments
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Birgit Bauer is a true German power woman: independent journalist, social media savvy, Bavarian and patient activist… Oh, and she has MS as well: Fräulein Trulla is how Birgit calls her MS. She blogs about her daily adventures with Fräulein Trulla for Brigitte Woman, my favorite German women magazine!

Please also watch this video interview with Birgit, where she explains why she decided against participating in a clinical trial for an oral MS treatment.

Hi Birgit, could you please briefly tell us who you are, what your patient experience was as well as what you do professionally?

 

My name is Birgit Bauer and I live right smack in the middle of Bavaria in Germany. My friends say I am a cosmopolitan Bavarian with little leather pants but a lot of laptop! All I can say is that I love my life and that despite my MS I am a happy and fulfilled human being.

I work as a freelance journalist, author as well as social media consultant for small to mid-size companies looking to get the message about their products successfully out into the Web 2.0 world. As a journalist I cover daily news and write special features or columns. This is how I started to blog for Brigitte Woman about my life with MS.

The author in me writes lyric and song texts, while the strategist sets the direction: To live a good life. I have managed to realize this for the past couple of years now, but it wasn’t always easy. MS forced me to completely restructure my life and I had a lot of negative as well as positive experiences whilst at it.

I decided to live my life with MS vs. to let my MS live my life. Clearly, the MS diagnosis in 2005 was a great shock at first, but I turned it into a chance to reorient my private and professional life. Some people walked out of my life, while others walked in. These changes also changed me, so that today, I am a like a colorful bird. I created myself the flexibility to do what I love as well as to be able to deal with my MS when I need to.

 

Why did you choose to talk about your disease online?

 

My personal experience has been that MS is often considered a mental disease here in Germany! One time someone yelled at me as if I was deaf and spoke to me in baby talk. That was a very painful experience and showed me how little people know about MS. They do not get enough information about the disease and then do not know how to react to it. Unfortunately, I reacted very aggressively to their ignorance at first. I did not want to be branded as a (mentally) sick person. I did not need anyone’s pity either but wanted empathy.

Many MSers in Germany do not tell anyone that they have the disease, because of the many prejudices against the condition. This is not a healthy situation, because it stresses them and puts additional pressure on their already difficult life with MS. This is why I started to write about MS: to inform people and change their attitude towards MS.

What has been your experience with social media activism so far?

 

MS in Germany is not sufficiently treated in the media and thus remains a very mysterious disease for most people. A few TV spots sponsored by DMSG (German Multiple Sclerosis Society) here or there are not enough to change the awareness for the disease, esp. in rural areas like the one I live in. Even though more and more people read my blog, as demonstrated by the ever increasing visitor stats, only few leave comments though, out of fear to be outed as an MS patient and publicly talk about their problems. This is very unfortunate, because an open conversation about MS would help to reduce their fears by increasing their knowledge.

What would you like to see from doctors, insurances, government, Pharma as reactions to your online activity?

 

Doctors: More team work with patients. Openness to all treatment options vs. stubborn insistence on a specific therapy. Readiness to find the common path that optimizes outcomes in a way that is manageable and safe for the patient.

Government and insurers: Transparent and easy solutions that focus on the patient. Participation of patient advocates in decisions so that we can find practical and actionable solutions and that more money flows towards patient care vs. into big administrative machines. Respect of patient rights, flexibility and readiness to include and reimburse all treatment options, also alternative ones.

Administration: Simple ways to speak to competent experts who know what is important to the individual patient. Decision makers cannot just have a theoretic view based on general data, but should have practical training before they get to make decisions that significantly impact the life of others.

Pharma: Drugs that make sense and have manageable side effects, better disease awareness information and support that is neutral and void of promotion. Sensible pricing and lobbying the government only where it makes sense for the patient.

With my blog I want to increase awareness about MS. This is why I chose the biggest German women magazine, Brigitte, to host it. I also want to give courage and a positive outlook to other patients. I experienced myself that an MS diagnosis can feel like the end of everything when you do not get support from all sides to deal with it. I hope that my blog will contribute to this support. I wish that it encourages others to talk to each other about their disease. I would like to receive more support for my blog and activities from other stakeholders, because together we could move a lot of things! I am open to collaboration with anyone who share these goals.

In your opinion, what are the best information sources online for your disease in Europe at the moment? Are there any from Pharma?
What information is missing?

DMSG is THE official MS online source in Germany. It was also my first source of information when I was diagnosed

MSworld (English) often provides useful news

Novartis “MS und ich” aktuell is quiet informative, the rest of the site is more for younger patients

IDW is a scientific news site that also has up to date information on MS

And finally all media outlets as well as, of course, the contact with other online MS patients.

 

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