7 posts tagged “lupus awareness”

Lupus Weight Gain: Q&A with the founder of Making Lupus Look Good

Posted 9 months 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.

Lupus Weight Gain - Alyshia 1

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.

Lupus Weight Gain - Alyshia 2

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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Age-by-age guide to navigating reproductive health with lupus

Posted June 19th, 2018 by

Lupus can affect your reproductive health in a variety of ways throughout your life and can raise the risks of complications during pregnancy. Thanks to medical advances, the chances of having a safe pregnancy have improved — the key is careful planning.

Check out this timeline of gynecological and reproductive health considerations when you have lupus, plus pointers if you’re considering getting pregnant.

Teens

Puberty and childhood treatments – The stress that lupus causes to your body can delay puberty (join PatientsLikeMe and log in to see our recent forum discussion on lupus and period problems). If you had lupus earlier on in life, you may want to ask your doctor about how different treatments you’ve had could affect your reproductive possibilities. Teens and young women should also talk with their doctor about contraception for those with lupus (more on that below), especially because some lupus treatments can harm a fetus.

HPV vaccine and cervical cancer prevention – The Centers for Disease Control and Prevention (CDC) recommends that all girls get the human papillomavirus (HPV) vaccine when they are 11 or 12 years old to protect them against cervical cancer. The vaccine is considered safe for people with a suppressed immune system, according to Lupus.org. But it’s recommended that people with lupus get vaccinated while on a lower dose of steroids for a better vaccine response.

20s and 30s

Pap tests – Although general guidelines call for women (ages 21 to 65) to have a pap smear every three years, women with lupus should have a gynecology exam with a pap test annually. This is because lupus meds can cause you to be immunocompromised, increasing the risk for abnormal paps and possibly cervical cancer down the road.

Contraception – If you have lupus, using contraception can help prevent unplanned pregnancy, but it’s important to talk with doctor about the right form of birth control for you and your case of lupus. For example, if you have antiphospholipid antibodies, which increase the risk of blood clots, you might need to avoid certain kinds of birth control pills. Some women choose a long-acting contraception device like an IUD.

Planning for pregnancy – We know much more now about how to manage lupus to achieve a healthy pregnancy than we did decades ago. Consider these pointers:

  • Think ahead and try to avoid getting pregnant during a lupus flare-up. Women who become pregnant in remission generally have better outcomes.
  • Talk with a rheumatologist and maternal-fetal medicine specialist at least three to six months before you plan to get pregnant so they can help you adjust or switch your medications to protect a developing baby, and to monitor you every step of the way—including post-pregnancy, during breastfeeding.
  • Consider the possible complications and risks, but keep in mind that many women with lupus are able to get pregnant and deliver healthy babies. MotherToBaby.org says that lupus increases the chances of complications like infections, high blood pressure, and serious conditions like preeclampsia and HELLP Syndrome. Having other health issues including lupus nephritis or kidney disease, high blood pressure, high antibody counts or blood clots could increase the risks.
  • Choose a hospital with a NICU just in case. Lupus can raise chances of miscarriage or early delivery, as well as infant health problems. Read more about lupus, pregnancy and newborn health here. If you’re feeling anxious about your health or your unborn child’s, explore stories of women with lupus who’ve had babies (like one woman recently featured in SELF magazine) to learn about their experiences.

Finding support for fertility issues – There are many ways to build a family. You are not alone. You may find comfort and wisdom talking with other women, such as at Resolve, an infertility site with links to local groups, or PatientsLikeMe members who’ve dealt with fertility issues (see “On PatientsLikeMe” below).

40s, 50s and beyond

Bone health – Taking corticosteroids can affect your bone strength, so remind your doctor to keep tabs on your bone density. Regular, weight-bearing exercise can help you strong. Your doctor may recommend extra vitamin D and calcium supplements.

Menopause – Lupus can cause early menopause (which can also affect your bones). “The good news for women in their 50s is that menopause may lead to a decrease in some lupus activity, although some studies have disputed this,” according to Lupus.org. “As women with lupus move through their 40s and 50s and beyond they need to be sure to get regular mammograms and Pap tests, especially if they have had long-term treatment with immunosuppressive agents.”

On PatientsLikeMe

Members have shared about their experiences with pregnancy and women’s health issues — join the community and sign in see what others with lupus have said about:

Any questions or anything to add based on your experiences? Add a comment here or in this forum discussion.

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