Patient perspectives: Tamara Sancy

Rebecca Aris interviews Tamara Sancy

Our latest ‘Patient perspective’ is that of Chilean e-patient Tamara Sancy, who shares her experience as a patient with systemic lupus erythematosus (SLE).

Chilean e-patient Tamara Sancy has systemic lupus erythematosus and, as a journalist, has been keen to broadcast her experiences to help other better understand and cope with the disorder.

Through her blog, Con o sin Lupus, and her media appearances she has become a lupus spokeswoman. Here she shares with pharmaphorum her thoughts on how patients with lupus can be better supported and the importance of being able to exchange experiences and useful information with other patients via social media.

Interview summary

RA: Tamara, thank you for taking part in this interview. Could you please start by explaining your background experience as a Lupus patient.

TS: I was diagnosed with systemic lupus erythematosus in January 2010, when I was 23 years old. I suffered a huge breakdown, which caused me to spend a month and a half in the hospital. Many of my organs were affected by lupus and the most damaged were my kidneys. Lupus nephritis (class IV) was detected and I then started an intense and long-term immunosuppressive therapy. About a year ago, I entered a remission stage that remains until now.

In December 2011, I was diagnosed with cataracts, caused by the big amounts of corticoids I consumed for a long period of time. I underwent surgery for it last July and now I consume a little dose of corticoids, which is monitored by my doctor every four months.

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“I think patients are constantly afraid of asking questions. They are afraid of asking silly things and choose to stay silent.”

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RA: What inspired you to start up your blog and what do you blog about?

TS: I’m a journalist and have always loved to write. When I got sick I realized that the information that was available wasn’t comprehensible for most people and though I found some blogs useful, they were all written in English. I decided to start writing “Con o sin Lupus” (with or without lupus), where I write my experiences as a patient, from a personal and emotional view and I also deliver informative articles that may be useful for other patients, as well as their families and friends on understanding the illness.

RA: What benefits have you found from using social media as a patient?

TS: In the first place, it’s been delightful to get to know so many people who are going through the same things I did or do. To find so much empathy with people from different places of Chile, Latin America and the world has just been great.

Besides that, I’ve had the chance to cooperate with patients’ associations and served as a spokeswoman for lupus, participating in seminars and appearing on national media, which acknowledged the relevance and complexity of lupus just a little time ago.

All of this has been very positive, but without a doubt, the possibility to exchange experiences and useful information with other patients has been the most important thing.

RA: What do you see to be the biggest challenge to patients with lupus and how could pharma help with that?

TS: I think the most challenging thing in lupus is the diversity of symptoms and manifestations. Every case is different, not every patient responds the same way to the same treatment nor suffers the same secondary effects, which in many cases are devastating, not just physically, but also emotionally. An example is Cushing’s syndrome derived from ingesting corticoids.

This uncertain scenery creates a lot of anxiety and even frustration for the patients and in my opinion, pharma could act as a counsellor, delivering better informative tools, beyond a prospect full of complex details, which many times aren’t even read or aren’t totally understood.

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“A chronic illness is not the end of your life, it’s the beginning of a new life that can be even more satisfactory than your former life.”

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RA: What’s been your experience of how pharma engages with patients?

TS: In Chile, some labs generate informative dynamics such as special websites or meetings with some patient communities.

Sadly we don’t have this experience for lupus patients. What we do have are agreements with specific drugstores and laboratories for preferential medication purchase.

RA: What are the biggest challenges in patients communicating what they need to both healthcare providers and pharma?

TS: I think patients are constantly afraid of asking questions. They are afraid of asking silly things and choose to stay silent and remain full of doubts.

On the other hand, many times health providers and pharma avoid explaining complex stuff and just omit valuable information. They prefer not to make the effort to “translate” their knowledge and keep it to themselves. That’s why is so important to work from both sides on the idea that information is vital. Patients should get empowered with their right to know what’s happening with their bodies, and healthcare providers and pharma should be able to answer patient’s questions in a simple and clear way.

RA: Finally, what key advice would you give to both other patients being diagnosed with your disease and to pharma companies looking to progress treatment and management of it?

TS: Patients should be patient, as weird as it sounds. Don’t despair when faced with a lupus diagnosis, don’t ever think you’ll suffer every single thing you read on Google, don’t lose hope if a treatment doesn’t work quickly or doesn’t work at all.

Lupus is complex, but not impossible to treat. A chronic illness is not the end of your life, it’s the beginning of a new life that can be even more satisfactory than your former life, your “healthy” life.

And for pharma companies, they should be patient, too. They should have enough patience to listen, to give space to listen what patients need. Patients immediate need is better, more understandable, information to help dissipate any doubts and anguish, which is also a very important factor in health recovery.

RA: Thank you for your time.

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About the interviewee:

Tamara Sancy is a Chilean journalist dedicated to digital journalism and social media since 2008. Lupus patient since 2010. In 2011 she started writing the “Con o sin lupus” blog (Conosinlupus.com), where she speaks about living well with a chronic illness and also delivers useful information to other patients.

Because of her blog she’s participated in e-health seminars, workshops with other patients, and has been interviewed by different media networks in Chile helping to raise lupus awareness in her country. Along with Agrupación Lupus Chile she struggled for Lupus to be included in GES Plan, a national plan which improves healthcare coverage for some illnesses, participating in online campaigns and meetings with members of the congress. Lupus is expected to be a GES illness from January, 2013, as Chilean government announced last October.

How can we better ‘translate’ complex ideas to patients?