57 posts tagged “patient interview”

Appearance + self-esteem in women with lupus: Q&A with the founder of Making Lupus Look Good

Posted 7 days ago by

Alyshia Merchant knows first-hand how lupus can affect you inside and out. After her diagnosis in 2012 and struggles with visible symptoms and self-esteem, she launched an organization called Making Lupus Look Good, which provides wigs and “glam sessions” to people with lupus-related hair loss and other symptoms. The organization currently serves people in Alyshia’s home state, Virginia, but she hopes to establish a 501(c)(3) and take the organization to a national level soon.

Alyshia recently shared more with us in this Q&A.

Can you tell us more about Making Lupus Look Good and what inspired you to start it?

My entire experience with lupus has affected my self-confidence tremendously. I would take pictures of myself and compare them to older pictures, and it was a very emotional experience. In the midst of my struggle, I developed a passion to help rebuild the self-esteem of other women living with the same insecurities that I struggle with day in and day out. My life is now dedicated to helping women see that they are still beautiful – despite whatever insecurities lupus may throw their way. It was my own pain that inspired me to create Making Lupus Look Good. I’ve found that there’s so much healing in helping others.

Right now, we run our organization based on volunteer hairstylists, makeup artists, estheticians and photographers. If a patient needs a wig due to hair loss, we begin an “Adopt-A-Patient” fundraiser. With this program, we raise funds to purchase the hair and create a custom wig for the patient. So far, we’ve only been able to provide our services to patients in Virginia because of limited resources. However, we recently partnered with Xtensions4Us, a hair company located in Independence, Missouri. With this partnership, we’ve created a bridge and we’ll be able offer services on a nationwide level in January of 2019. We are hosting a fundraiser, An Evening Of Hope, on December 21 (keep an eye out here for event details). We plan to use a portion of the proceeds to finally become a 501(c)(3), so that we can change even more lives.

What happens in a “glam session”?

Some of the many challenges associated with lupus include hair loss, skin disfigurement and, in many cases, weight gain from medications (chronic fatigue also makes working out very challenging). Because we understand how devastating these symptoms can be for a woman, Making Lupus Look Good offers a full glam experience, including a makeover/photo shoot, custom wigs if needed, as well as one-on-one skincare consultations and health coaches. All of these services are free of charge to the patient and are intended to help restore the self-esteem that these women have lost during their battle.

How has lupus affected your physical appearance? Any pointers for coping with visible symptoms/treatment side effects?

Many symptoms affected my self-esteem, including the classic butterfly rash across my face and weight gain – not only from steroids used to suppress my immune system, but also from edema when lupus was attacking my kidneys. I would carry around about 30 pounds of painful fluid in my feet, legs and stomach. Macular edema was another struggle for me – it caused swelling and puffiness around my eyes.

Out of all of the symptoms that I’ve encountered, hair loss hit me the hardest. I would lock myself in the bathroom and cry for hours.

Although I was able learn to better manage lupus after six months of chemotherapy, I’ve still found that these symptoms resurface from time to time. So I have found many ways to help me cope, like:

  • Whenever I’m dealing with hair loss, I go out and find a very stylish wig that flatters my face. I’ve found that as long as I’m not putting any stress on my hair by pulling and tugging, it will grow back.
  • As far as skincare, I use an SPF 50 sunscreen lotion. If I’m attending an outdoor event, I’m not ashamed to walk around with an umbrella. Yes, I do get a few stares, but that beats getting a skin rash, or triggering lupus. (If you do experience a skin rash, you can reach out to a makeup artist, or go on YouTube to find different ways that makeup can conceal rashes and pigmentations.)
  • If I’m experiencing swelling, I cut down on sodium, which helps me battle weight gain and water retention. I also go out and buy a few inexpensive pairs of stretchy jeggings. This not only makes me feel confident, but it’s also less painful than wearing a pair of blue jeans that are too tight.
  • And when I’m experiencing puffy eyes, which is very common for lupus nephritis patients, I use a cool facial mask for about 20 minutes. This usually helps. But if for some reason my eyes are still swollen, I simply put on a pair of nice sunglasses.

Keeping up appearances while managing a serious condition can be tough – what’s the value of trying to look good when you’re not feeling great?

It was a long and hard journey adjusting to all of the changes that lupus has thrown my way physically, because I’d always based my beauty on just my looks. But I was humbled. And I learned that I am more than just my looks. We all are.

Yes, it’s hard while it’s happening, and it can beat you down at times. And that’s OK – as long as you get back up. Surviving hard times makes you a stronger person. And as long as you keep a positive mindset, you’ll find that most things aren’t as serious as you thought they were. On days when you’re feeling off, go shopping. Go out and get some new comfy clothes, put on some makeup, throw on those sunglasses and go. At the end of the day, it doesn’t matter what anyone else thinks or sees, as long as YOU feel good. Because I believe that if you feel good… you can beat it.

On PatientsLikeMe about 34,000+ members are living with lupus. Want to connect with them about topics like this? Join the community or log in today.

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From preclinical to approval: How clinical trials bring new treatments to market

Posted September 15th, 2017 by

Often we hear of new treatments becoming available, but have you ever wondered what each new treatment had to go through to get approved by a regulatory body like the FDA? Before a new treatment is approved for commercialization, it needs to go through a meticulous trial process to prove a number of things: Is the drug safe? What are the potential side effects? Does the drug do what it’s supposed to do? All of these questions and more need to be answered before a drug can be considered for approval by the FDA, so that’s where clinical trials come in. Here’s a breakdown of what’s involved in the drug development process, from preclinical through to commercialization and post-approval monitoring.

(Click to enlarge)

How can I participate in a clinical trial or find out more?

  • You can learn more about research and clinical trials by joining or logging into PatientsLikeMe and clicking on the Research tab
  • Use the PatientsLikeMe Clinical Trial Finder to search for trials that could be a good fit for you
  • Check in with local associations and hospitals to see if they are recruiting for any trials
  • Talk to your healthcare provider/clinician to see if there are opportunities they are aware of and how you can participate
  • If you’re a member of PatientsLikeMe, make sure you consistently update your profile so we can let you know about research survey opportunities that are right for you

Interested in finding out more about how PatientsLikeMe members are impacting change in the clinical trial sphere? Check out these stories:

It’s Clinical Trials Day, and patients are driving change

“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Bringing the patient voice to clinical trials

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