877 posts in the category “Conditions”

Stem cell therapy & MS

Posted 6 days ago by

Stem cell therapy is a popular topic in the MS forum and some members are already tracking and evaluating their experience. How does it work? Are there risks? To find answers to your stem cell therapy questions, we asked our team of in-house health professionals to take a look at the current research.

What are stem cells?

Stem cells are different from other cell types because they can continuously replenish themselves. They have the ability to develop into any type of cell and act as an internal repair system in your body.

Because stem cells have the potential to be a renewable source of replacement cells, researchers started investigating how they could be used to treat a variety of diseases.

What is stem cell therapy?

In stem cell therapy, a patient’s cells are replaced by new cells, either their own (autologous) or from someone else (allogeneic). The first step in this process involves growing stem cells in a lab and then transforming them into a specific cell type. These specialized cells are infused into the patient where they may multiply and help repair damaged tissues.

However, more research is still needed to fully understand how to use these cells for regenerative or reparative medicine.

What’s the latest research in stem cell therapy and MS?

Many studies are evaluating which type of stem cell therapy and which delivery method is the most safe and effective for MS. Here’s a recap of new approaches and results:

  • Rebooting the immune system: Hematopoietic stem cell transplant (HSCT) replaces the cells in the bone marrow which in turn supports your body’s immune system. Stem cells are collected from your blood or bone marrow and then later infused back into your body to regenerate your immune system.
    • In between the process of collecting the stem cells and re-infusing them, you might use chemotherapy, biological agents, or radiation therapy to wipe out the existing immune system so it can be built up again. This method is thought to slow down the progression of MS.
  • Stem cells to promote repair: In MS, a patient’s immune cells attack the protective layer that surrounds the nerves (myelin) and the cells that produce myelin (oligodendrocytes). The loss of myelin and damaged neurons causes scar tissue to form in the damaged areas.
    • Stem cells may be able to replenish those neurons that are lost and reduce inflammation and scarring. Clinical trials are testing stem cells and their ability to stimulate myelin repair.

Still in the early stages: More extensive clinical trials are in progress to evaluate the safety and efficacy of stem cell therapy for MS. No federal laws have banned stem cell research in the United States, but there are some restrictions on funding and use of stem cells. Right now, there are only 3 studies available in the US that are recruiting patients to study stem cells in MS within the US. Find out about ones near you.

What are the potential risks?

Because stem cell therapy destroys and rebuilds your immune system, it may increase your risk for:

  • Immune rejection of the infused cell: This might happen because your body considers stem cells as a foreign element.
  • Tumors: Stem cells have the ability to duplicate over their lifespan. This may lead to their potential for growing uncontrollably into malignant tumors. Healthcare providers are aware of this possibility and with newer practices, they may be prevented.
  • Transmission of foreign pathogens: Donor to recipient transmission may result in the introduction of viral, bacterial, or fungal pathogens that may lead to adverse reactions.

Considering stem cell therapy?

Talk to your healthcare provider and decide together if this is the right treatment or option for you. The International Society for Stem Cell Research (ISSCR) has prepared a list of things to know for those considering stem cell treatment:

  • Beware of stem cell treatments offered without regulatory approval or outside registered clinical trials. Some stem cell treatments may not require FDA approval, but those that involve manufacturing specific cells do, so it’s important to talk to your provider to understand if the treatment you’re considering is being used appropriately. Find more information here.
  • Be wary of clinics offering treatments for a wide variety of conditions or diseases.
  • Watch out for clinics that market their treatments, instead of using clinical evidence.

Want to know more? Check out these resources:

Have you tried stem cell therapy? Join PatientsLikeMe or log in to weigh in or see what others are saying.

Sources:

https://www.cirm.ca.gov/patients/stem-cell-key-termshttps://www.nationalmssociety.org/Research/Research-News-Progress/Stem-Cells-in-MShttp://www.momentummagazineonline.com/stem-cells-know/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070641/https://stemcells.nih.gov/info/basics.htmhttps://www.fda.gov/AboutFDA/Transparency/Basics/ucm194655.htmhttp://www.closerlookatstemcells.org/stem-cells-and-medicine/multiple-sclerosishttp://www.cumc.columbia.edu/lymphoma/bone-marrow-transplantation-autologous-and-allogeneic

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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.

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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