Highlights Project

The Highlights Project , a collaboration between Novartis and Kevyn Aucoin Beauty, is designed to provide support to those living with the physical manifestations of acromegaly and Cushing’s disease through the art of makeup. To Aucoin, who had acromegaly, makeup was a tool for discovery and a reflection of both inner and outer beauty. In continuing his legacy, The Highlights Project offers resources, such as makeup tutorials and educational tips, to help people with these conditions manage the psychosocial challenges they face each day. We hope that you find these posts inspiring, share them with friends and family and check back regularly for new information!

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MATTERS OF THE MIND: THE ENTIRE FAMILY SYSTEM

As most of the focus is on the identified patient, it is the entire family which is affected. I have met with spouses who struggle with caregiving responsibilities and their own frustrations while watching a loved one suffer. Young adults and children have their own emotions and worries regarding a diagnosed parent to contend with—often a result of the physical changes they see in their parent. Art therapy is one type of activity for children that can be extremely beneficial in helping them express their emotions.

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GUEST POST - SHANNON G., LIVING WITH ACROMEGALY

I discovered I had a brain tumor in May 2005. I underwent surgery in June 2005 and January 2006. In August 2008 after having a scan due to increased frequency and days of debilitating headaches I discovered the residual tumor had grown. It was also at that time that I was diagnosed with acromegaly. That Fall I began several weeks of radiation and began a treatment regimen. I wish the Highlights Project was around during those early years of not feeling well and not knowing any better. I am grateful for this information. Although I was diagnosed in 2008, I am just recently learning more about the symptoms of acromegaly and management of the disease. When dealing with a rare disease you have to be your own best advocate by staying informed. What comes to mind with my medical journey and the knowledge I have acquired; “better late than never.”

Knowledge is power and good resources are invaluable. As I have spent time on the Highlights Project website I am happy about learning new information about my condition and management tips through the links provided. As I mentioned before, better late than never but I really feel cheated by not being aware of the side effects of acromegaly, such as colon polyps, sooner. It is important to have concise information for those who are newly diagnosed because dealing with a rare disease can be overwhelming. Now who or what do I feel cheated me? I do not know but now I have knowledge; I feel good about what my future holds. I am going to make an effort to check the Highlights Project website monthly for updates, fun stuff, or whatever surprises may be waiting.

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MATTERS OF THE MIND: FAMILY SUPPORT

Being a Marriage and Family therapist, patients have expressed that while family tries to offer support, through their own feelings of helplessness, they may at times inadvertently fall victim to the same despair of their loved one. In working with many family members, my greatest suggestion is to be an active, emphatic listener and to have open communication as to your own feelings. Many families feel just as helpless as their loved ones with a pituitary disorder. Seeking psychotherapy for the entire family can be extremely helpful in exploring these dynamics.

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HIGHLIGHTS PROJECT GUEST POST – JILL SISCO, ACROMEGALY COMMUNITY

When social media first became popular I posted a photo, but a very old one, due to the changes that my disease had made in my appearance. We live in such a visual world and in the past, in my younger years, I too was guilty of judging by appearance. I suppose this was one of the most valuable lessons I have learned from my disease, that it isn’t what is on the outside that matters, but on the inside that will help you be resilient and live your best life possible. I want to say as a patient with acromegaly, I am so very grateful for the Highlights Project. It has allowed me to feel less anxious about these changes. It has not only allowed me to feel pretty again for a day, but has taught me helpful tips to feel pretty every day. I have finally come to a place in my life where I feel like both my inner and outer beauty can shine through this disease.  Thank you Highlights Project for not only helping me but for helping a whole community of people. We appreciate it more than you will ever know.

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Matters of the Mind: Social Disconnect

With physical changes often brought on by a pituitary disorder, a patient may face social challenges. Many patients express concern in attending activities with even family and friends. Oftentimes patients will share stories of turning down social events. An important question to ask one’s self is, “am I less interested in the things which used to give me pleasure?” Withdrawing from these lifestyle activities can create depression and anxiety. In instances such as this, being referred to a psychotherapist can be extremely helpful.

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GUEST POST - SHANNON G., LIVING WITH ACROMEGALY 

Although “Highlighting” our outer beauty can make us feel great, we have to be in tune with what is happening on the inside. I’m experiencing some physical discomfort and feeling extremely fatigued and I’m not sure why. Is it general acromegaly stuff or is it the over indulgence in carbohydrates? Whatever it may be, when I feel like this, I’m even more motivated to put my “face on.” I definitely do not want to look how I feel.

Another reason makeup is so important to me is I cannot dress the way I want to in part because of my weight and largely due to my limited shoe choices; I wear a size 12 double wide and the styles are not always so appealing; shoes make an outfit. I feel like if my wardrobe is not up to par at least my face can be pretty. And thank goodness for the makeup tips I learned and the products I was exposed to through the Highlights Project with Kevyn Aucoin makeup. I suffer greatly from heat intolerance and sweat profusely. Until learning about the priming serum, I would not put any type of moisturizer on my face because it would end up as white milky product dripping down my face. What have I learned through all of this? There is a way around a lot of things.

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Matters of the Mind: Being An Active Player In Treatment

It’s important for patients living with pituitary conditions to take an active role when it comes to their health, including the choices they make in regards to healthcare providers and medication management. The first step is identifying a healthcare team that the patient can trust, which will allow for open and honest conversations about their health. Patients shouldn’t be afraid to ask questions and do their own research to ensure they are having informed conversations each time they show up for a doctor’s visit. Striving to control what they can control, while coping with what they cannot control. 

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Guest Post - Colleen D., Living With Cushing’s Disease

One day it occurred to me that I was having more bad days than good days.  As I got sicker, my symptoms permeated more parts of my life; work, leisure, sleep.  There is not one part of my day that has not been touched by this disease.

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Matters of the Mind: Self-Concept 

Upon diagnosis many patients find that they over-identify with their diagnosis and often times think that this is all that they are. It’s important to remember that this is not the case. Being diagnosed with a pituitary disorder is simply a part of their life path. Educating patients that their attitude towards treatment and prognosis will heavily effect their outcome. How well a patient learns to cope with his or her disorder will affect their overall well being.

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Guest Post - Rachel W., Living with Cushing’s disease

As a Cushing's disease patient, there is a breadth of information concerning the physical manifestations of the disease. Unfortunately, the psychosocial consequences of this disease do not receive enough attention.

 In my eight years of struggle with Cushing's disease, my relationships have been tested many times resulting in the end of the relationship. It's extremely difficult to nurture relationships when some days you can't even get out of bed, much less upkeep social obligations. Many friends do not understand why I can hike a mountain one week and the next, not even able to walk to the mailbox.  

 Keeping friendships alive are hard enough, but romantic relationships are even more difficult, considering the emotional scars that have formed due to the physical damage caused by the disease. Sometimes I think I'd rather be alone than rejected.

 I've learned not to take it personally, and to rely on the friends that are able to weather the storms that sometimes cloud the relationship. I encourage patients that are struggling to keep their relationships alive to rely on the friends that can withstand the rollercoaster that is Cushing's disease. They're more valuable than gold.

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Guest Post - Colleen D., living with Cushing’s disease

It would be a lie if I said that I was comfortable with the unknown. I have never liked surprises and it has always driven me crazy when I’ve had to wait until the last minute to plan something or get information. This sense of focus has served me well in my profession as a teacher which was my dream from an early age. But discovering that I had a rare disease took away that sense of control. Everything I knew about myself was turned upside down. The symptoms of the disease hindered my ability to express myself and my talents. Once the girl who loved to be singing on a stage, I was now horrified with the idea of standing in front of a crowd because of intense anxiety and the weight I had gained. Once my greatest joy, it had become my greatest fear.

Life became an exercise of finding the most comfortable scenarios. I was often too fatigued to participate in events with my family and friends and when I did attend, I was uncomfortable because of the way I looked. My face was always red and sprouting new hairs in places they did not belong. No matter how much I shopped I could not keep up with my growing waistline. I was plagued with visible and invisible symptoms that made me feel like I would never again control my own life. Over time the tables started to turn. I realized that I had Cushing’s disease but I was not defined by Cushing’s disease. I was more than the sum of my symptoms. I was a wife, a daughter, a sister, an aunt, a teacher, and a friend. I knew that I could continue to strive to be the best of each of those things despite my illness. As time progressed, I discovered the power to control my response to my situation even in the worst of circumstances. Cover me with makeup and I am still the same person that I have been, but that brush is a tool that helps me take back some of the control that I have lost.

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Guest Post – Shannon G., living with acromegaly

Having been accustomed to being identified as pretty, morphing into Shrek has not been the best thing to happen for my esteem. I was thrilled to participate in the Highlights makeup tutorial project in 2013 to learn some valuable tips and techniques. I absolutely love makeup. I enjoy putting it on every day and feel so much more confident when I wear it. I especially love eye makeup. For me, doing up my eyes distracts from the protruding forehead and lower jaw; my nose and lips don’t seem quite as big. I should feel pretty without makeup but don’t. Some may feel that it is a tragedy that I feel that way but whatever it is to give you a boost and as long as it isn’t hurting someone else in the process or is unhealthy for you, go for it! For me it is highlighting my face with makeup. One day a complete stranger said to me “Your makeup is perfect.” Maybe I need to rethink my community and economic development career and explore cosmetics. Actually, I only like putting makeup on myself.

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THE HIGHLIGHTS PROJECT INSPIRATION QUOTE

“The fact is there is really no such thing as “normal” – everybody is different, and that is the essence of their beauty.”– Kevyn Aucoin

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The Highlights Project Acromegaly Makeup Tutorial: An Update on What We’ve Learned 

While contouring can add dimension to your face to help diminish pronounced features, using lipstick and basic eye makeup can make other features pop! Don’t be afraid to apply bold color to your lips or some shine on your eyelids to make these the boldest features of your face!

Applying makeup on skin that is acne-prone or oily may seem like it will only make these issues worse but products like tinted moisturizers and matte foundations can actually protect your skin while creating one smooth skin tone.

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The Highlights Project Acromegaly Makeup Tutorial Chapter 5: Keeping Oily and Acne Prone Skin Under Control

When you’re living with acromegaly, you may be more likely to experience perspiration and oily or acne-prone skin. Products like tinted moisturizers not only hydrate and balance oiliness but they also even out the texture of your skin. Tinted moisturizers can also act like primers to prevent makeup from rubbing off even when you have excessive sweating. Watch this video for some more application tips to help address these skin types.

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THE HIGHLIGHTS PROJECT INSPIRATION QUOTE

"Beauty might bring happiness, but happiness always brings beauty." – Kevyn Aucoin

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THE HIGHLIGHTS PROJECT INSPIRATION QUOTE

“Beauty might bring happiness, but happiness always brings beauty.”– Kevyn Aucoin