41 posts tagged “psoriasis”

Breaking barriers on World Psoriasis Day

Posted October 28th, 2016 by

Back in 2004, a group of patient associations from around the world launched World Psoriasis Day. Conceived by patients, for patients, World Psoriasis Day is an international event that aims to give a voice to the more than 125 million people worldwide living with psoriasis and psoriatic arthritis.

This year’s theme is breaking barriers. Psoriasis patients face barriers every day in the healthcare system, at work, in school and social situations. So tomorrow on October 29, the International Federation of Psoriasis Associations (IFPA) is calling on everyone to help psoriasis patients:

 

FIGHT prejudice, stigmatization and discrimination

RAISE awareness, understanding and hope

GAIN access to proper diagnosis, treatment and improved quality of life

 

Here’s how you can get involved:

Share IFPA’s animated film – This short video focuses on this year’s theme of breaking barriers – help spread it on social media and share it with friends and family.

Join the Thunderclap Campaign – Sign up  and allow Thunderclap to post a message on your social media on October 29 – they’ll be posting at the same time all over the world to speak up for psoriasis with one voice.

And if you’re living with psoriasis, connect with more than 5,400 PatientsLikeMe members in the psoriasis community.

Let’s rally together tomorrow and help break barriers.

 

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“Listen to yourself.” Member Daniela opens up about life with MS and psoriasis

Posted October 13th, 2016 by

Daniela (DanielaO) is living with multiple sclerosis and psoriasis  in Puglia, Italy, and loves crafts, art history, music and traveling. She recently opened up to us about getting her first diagnosis at age 14, managing multiple conditions, and how connecting with others on PatientsLikeMe makes her feel “present and part of a whole.”

Here’s what she had to say about reinventing herself and finding support from others who understand.

Tell us a little bit about yourself. What’re your hobbies and passions?

Ciao, my name is Daniela, I am from Tuscany and live in Puglia, Italy. I like traveling, seeing new landscapes, meeting people and learning about their cultures. I studied Fine Art and I love to make things with my hands. I am passionate about crafts, art history and music, particularly baroque.

What was your diagnosis experience like?

At the age of 14, I had psoriasis. My skin became like a map of red spots. Very stressful. On turning 20, I was diagnosed with Graves-Basedow, as my thyroid was not working adequately. Big stress. I was 39 years old when Miss Multiple Sclerosis came to visit me. Very distressful, especially as I was bringing up two children on my own. Now I am aware that these diseases are caused by immune system dysfunctions.

How has life changed since your diagnosis?

Having psoriasis, prompted/pushed me to try to understand why. The first book I read about healing was The Doctor Himself by Naboru Muramoto. Since then I learned many things about foods’ properties, how the quality of my thinking and emotions can modify the chemistry in my body. I did seminars learning why and how to maintain a healthy gut. I believe therefore that, mentally, I am responding well. Of course, there are really bad moments, but I’m so happy when they leave.

In the forums you talk about “reinventing” yourself, how has that helped you cope with your MS?

Because of MS, for several years I studied the Method Feldenkrais and became a Feldenkrais teacher. It has been a big challenge for me: Method Feldenkrais is about body movements, “talking” to the nervous system. It increased the awareness of myself and the world around me, more confidence and strength.

You mentioned that being on PatientsLikeMe makes you feel less alone and more curious – how has it been for you to track your health and connect with others on the site?

Multiple sclerosis symptoms are like the waves of the sea, they come and go and are never the same. Made of so many tonalities and degrees. At the moment, keeping a record of my health helps me a little. To be connected with others is very helpful. I live in a gorgeous place in the countryside, but this means I am cut off and isolated. To be able to interact with people who can understand me, makes me feel present and part of a whole. Of course, there are Italian forums, but I like to go far…

What advice can you give others with MS?

Just one, easy advice: Listen to yourself. I do have very special advice for those affected by psoriasis: find a doctor who knows Doctor Coimbras’ Protocol and ask about taking high doses of vitamin D3. I started taking it for MS since April 2015, after few months my psoriasis disappeared. After 40 years I was finally free of it. This is a great achievement. Thanks, Team at PatientsLikeMe, for giving me this great opportunity.

 

 

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