19 posts in the category “Lupus”

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

Posted 1 week 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.

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What’s the lupus/kidney connection? Our healthcare pros explain lupus nephritis and more

Posted 4 weeks ago by

“Kidney” is one of the top terms that PatientsLikeMe members are searching for in the lupus forum (click here to join the site for forum access). Last year’s news of Selena Gomez’s kidney transplant put a spotlight on the lupus/kidney link. Lupus can affect your kidneys in a few different ways, so we asked our Health Data Integrity Team (our in-house clinical healthcare professionals) to help us learn more.

What is lupus nephritis?

Lupus nephritis is an inflammation of the kidneys caused by an autoimmune response. Lupus can cause an autoimmune attack on various parts or tissues in your body, including the kidneys. During this attack, the immune system turns on itself and tries to fight off “foreign invaders” — which are actually your body’s own healthy cells. This can trigger inflammation and swelling of the tissue in an attempt to eliminate foreign bodies.

Lupus nephritis can impair the kidneys so they’re not able to properly remove waste or control fluids in your body. Left untreated, nephritis can lead to more serious kidney disease. Cases may range from mild to severe, depending on the signs and symptoms and what areas of the kidney are involved.

Here are some symptoms of lupus nephritis:

  • Unexplained swelling in your feet, ankles, legs, fingers, arms or eyelids
  • Unexplained weight gain
  • Blood in the urine, or urine that looks foamy or frothy
  • Increased need to urinate, especially at night
  • Headache and/or dizziness
  • High blood pressure

Should you get screened?

About 50 percent of people with systemic lupus erythematosus (SLE) develop lupus nephritis, so all patients with SLE should be regularly screened for signs of nephritis. Not everyone will have the symptoms listed above, so screening tests can be helpful in diagnosis. Screenings may include:

  • A kidney biopsy — A tiny piece of tissue is removed and examined under a microscope to determine if there is any scarring or inflammation in the tissue.
  • Urine tests — An abnormal urine test may show there are cell fragments or proteins in the urine, which may signal improper filtering in the kidneys.
  • Blood tests — If the kidneys are not properly functioning, there may be excess fats and other small molecules present in the blood.

How is lupus nephritis treated?

Although lupus nephritis is a serious condition, it can be treated. The goal of treating lupus nephritis is to return normal kidney function and prevent any further kidney damage. Treatments may vary depending on the severity of the disease, but two options are:

  • Steroids such as prednisone, to help reduce the inflammation.
  • Immunosuppressive drugs (either in combination with steroids or alone). These drugs help suppress the immune system and further reduce inflammation. Immunosuppressive drugs may include cyclophosphamideazathioprine and mycophenolate. Although cyclophosphamide has some significant kidney-related side effects, it may help prevent lupus nephritis from getting worse. With proper dosing and monitoring by your healthcare provider, you can properly manage and minimize side effects.

Other lupus-related kidney issues

Other kidney disorders can occur as a result of lupus itself or as a side effect of treatment. For example, immunosuppressive drugs taken for lupus can weaken the immune system and increase your body’s susceptibility to infections, particularly urinary tract infections (UTI).

UTI symptoms may include frequent urination, pain or burning during urination, and urinary urgency. If left untreated, the bacteria from the urinary tract infection may travel up into the bladder and kidneys, causing more serious infections that may be harder to treat. If you experience any of these symptoms, let your healthcare provider know immediately in case you need antibiotics to treat the infection.

Some medications used to treat lupus may also cause signs and symptoms of kidney impairment that may be similar to signs of lupus nephritis. Each of the drugs used to treat lupus have their own set of unique side effects, most of which are manageable. If you have any specific questions regarding the risks of the medication you’re taking, ask your healthcare provider for a more detailed and individualized explanation of how your medication can affect you.

It’s important to tell your provider about any new symptoms you experience because they may point to lupus-related complications. Also, remember to consult your healthcare provider before starting any new medications or stopping your treatment.

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