The focus is on you! Conversation with Lesley Ann Saketktoo


Ottobre 2018

On the issue 30 of Morfologie, Serena Mingolla interviews the founder of the Research Centre for the Treatment of Scleroderma and Sarcoidosis Patients between Tulane and the State University of Louisiana, an institution that has received international recognition.

Before becoming a doctor, Lesley Ann Saketkoo was a movement artist and special needs teacher, who has recently been named Doctor of the Year 2018 by the Scleroderma Foundation. The award recognizes leadership and commitment to the community battling scleroderma, a disabling and life-limiting multi-organ autoimmune disease with progressive lung, heart, kidney, gastrointestinal tract and/or vascular involvement.

Lesley Ann Saketkoo is an associate professor at Tulane University School of Medicine and in 2011 she established the Scleroderma and Sarcoidosis Patient Care and Research Center between Tulane and Louisiana State University, which received international recognition as a “center of excellence” by the European Scleroderma Trials and Research Group (EUSTAR), the Scleroderma Foundation, and the Scleroderma Clinical Trials Consortium (SCTC).

When I called her for the interview I fell in love with her angelic voice, I remember thinking that every doctor should have that kind of reassuring voice. And after, talking to her, I understood why she is so special: she is the evolution of the doctor, the one who cures the body but talks to your mind trying to make you feel healthy and really good.

Even if Saketkoo is an internationally recognized researcher, educator and clinician in scleroderma/systemic sclerosis, sarcoidosis, myositis, pulmonary hypertension and interstitial lung disease, I spoke with her about what she considers the three pillars of medicine – sleep, nutrition and exercise -, and her personal fourth pillar: beauty in life (of mind and environment). All of these require being the power of your health.

Your motto is “the focus is on you”. Why is it so important?
Even if you don’t have an illness, focusing on one’s health requires dedicated attention and effort. Taking time to think about yourself, organizing one’s routine, requires the spaciousness of time to learn about and select what is best for your health…this is something very important for everyone but for people with scleroderma, it is an imperative to be as healthy as possible and this requires time. Most patients invest so much in others and initially reluctant to divert time to themselves but the paradox is that focusing on self helps us be the best we can be for others too. This illness has so many manifestations upon which best coping depends on quality time dedicated to oneself to recognize and implement health cultivating strategies and adhering to essential self-management.

One example is to stay focused on what we eat. Isn’t it?
Yes! Take the time to notice first of all if our body tolerates particular foods, its volume, all its various qualities…this requires sensitivity to our body’s sensations and response. Food tolerance is also based on the texture of food in term of how digestible it is, if the body can tolerate or not the nutrients of that food. Another important aspect is digestion and taking time to eat mindfully. People with Scleroderma don’t have the luxury to eat fast for a number of reasons and if a patient with scleroderma eats fast, really, he is doing themselves a disservice. The more we pay attention to food before we eat -choosing, preparing, and thentakingtime to chew to get food to its most moist and digestible form we are making food more tolerable for the body and a more pleasant life for ourself.

Nutrition is the topic of a study you are conducting at the moment. What is it about?
The study is looking at different diets and food choices and we hope to understand their effects on symptoms related to scleroderma. Many people living with scleroderma perceive that what they eat influences their symptoms related to their illness. This study is inspired by people attending the Scleroderma Foundation Patient Conference who expressed a desire for research such as this to be conducted.This is aninternational study run by the New Orleans Scleroderma Patient Care and Research Center using telephone counseling and online questionnaires to assess the impact of various diets that might impact symptoms in scleroderma such as bloating, cramping, nausea, vomiting, regurgitation, diarrhea, constipation. All the study is done remotely so it is possible to participate for scleroderma patients all over the world if they can speak English.

How important is regular sleep for health?
Sleep problems quality may twice as poor in systemic sclerosis as the general population. And although there are few studies in scleroderma, in the general population sleep has been shown to be related to survival and improved cognitive and mental healthas well as decreased inflammation and fatigue. Again, sleep is another area that requires development of a healthy routine for sleep preparation.

You are also a kundalini and hatha yoga teacher and you spread the value of yoga for people with scleroderma.
Mindfulness both in resting the mind and pleasure of movement are important for the many physical, and of course, psychological challenges. This includes taking a few moments for yourself throughout the day, or when experiencing a difficult emotion, to notice your breath to invite equanimity and make better decisions. Yoga, and other systems of exercise, improves physical conditioning in people with systemic sclerosis increasing mobility, flexibility and strength of total body, hands, muscles and joints; while reducing systemic inflammation and assisting digestion. The connection and cultivation of pleasure is the most central principal in both meditation and in movement. The sensation of pleasure even imagining the air tingling over one’s skin as the body moves – allows the larger outer bulky muscles to soften, and the force of movement to be picked up by the smaller deeper intrinsic muscles that are closest to the joint; and when these are engaged and developed, movements become safer, and joints working in better alignment. It becomes much harder to hurt yourself for the joints.

“Scleroderma will not take my smile” has been the message of the World Scleroderma Day 2018. Do you think smiling to life counts for our health?
It’s so important! There is much evidence that laughing, keeping a good spirit, feeling pleasure have an impact on our genetic and immunology. This is another area I’d like to spend more time studying and very much part of the ‘4th Pillar of Health’: beauty in life.

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