Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com

Sunday, February 18, 2024

Disparities in Pregnancy Experiences Found Among Black, Hispanic/Latinx and White Women with MS

 Researchers examined medical records of women with MS in the U.S. and their pregnancy outcomes, comparing those of Black, Hispanic/Latinx, and white people. They reported that those identifying as Black or Hispanic/Latinx tended to enter pregnancy with higher levels of MS disability and often with fewer health care resources. There were also differences in types of delivery, birthweights, and socioeconomic factors.
 
Why Does This Matter? This study adds to the growing awareness of health disparities and can inform ongoing efforts to improve care for everyone living with MS.
 
Background: MS is highly individualized, and disease characteristics and a treatment plan are significant considerations in family planning and pregnancies. These investigators wanted to understand how healthcare inequities may impact the pregnancy outcomes of Black and Hispanic/Latinex women. Previous studies suggest that prenatal care is especially important for Black and Hispanic/Latinx women because they tend to have higher risks of high blood pressure, diabetes and other disorders that may complicate their pregnancies.
 
Study Details: To better understand differences among women with MS and their pregnancy experiences, Dr. Riley Bove (University of California, San Francisco - UCSF), a National MS Society Harry Weaver Scholar, and collaborators examined medical records from 9 MS centers in the U.S. They looked for pregnancy and delivery information of women with MS or CIS (a single neurological event that indicates early MS) between 2010 and 2021. They analyzed 294 pregnancies that resulted in live births.
 
Results: Some differences they found included:

  • Black and Hispanic/Latinx women tended to be younger than white women when they became pregnant, and they had higher levels of MS disability when they became pregnant.
  • More white women had private insurance, and more received an ultrasound exam at 14 weeks of pregnancy.
  • Black women had the highest rates of emergency cesarean deliveries, and Hispanic/Latinx women had the fewest delivery complications. Babies’ birth weights of both tended to be lower than those of white women.
 
Comment: The authors suggest that some reasons for the differences may include availability of transportation, types of insurance, social support, and access to prenatal care. Studies like these can inform ongoing efforts to improve care for everyone living with MS.

Wednesday, February 7, 2024

Why Do Women Have More Autoimmune Diseases? Study Points to X Chromosome

 

Women are much more likely than men to have their immune system turn against them, resulting in an array of so-called autoimmune diseases, like lupus and multiple sclerosis. A study published on Thursday offers an explanation rooted in the X chromosome.

The research, published in the journal Cell, suggests that a special set of molecules that act on the extra X chromosome carried by women can sometimes confuse the immune system.

Independent experts said that the molecules are unlikely to be the sole reason autoimmune disease skews female. But if the results hold up in further experiments, it might be possible to base new treatments on these molecules, rather than on the current drugs that blunt the entire immune system.

“Maybe that’s a better strategy,” said Dr. Howard Chang, a geneticist and dermatologist at Stanford who led the new study.

Male and female embryos carry 22 identical pairs of chromosomes. The 23rd pair is different: Females carry two Xs, while males carry an X and a Y, which lead to the development of male sex organs.

Each chromosome holds genes that, when “switched on,” produce proteins to do work inside of cells. You might expect that women, with two copies of X, would make twice as many X proteins as men do. Instead, they produce about the same level. That’s because one of the two X chromosomes is silenced.

A molecule called Xist clings to the second X chromosome “like Velcro,” Dr. Chang said. As hundreds of Xist molecules wrap themselves around the X chromosome, they completely shut it down.

Keeping one X silent is crucial to women’s health. If a gene on the second X chromosome escapes Xist’s control, it will result in an excess supply of proteins, some of which could be toxic.

In 2015, it occurred to Dr. Chang that the silencing itself might also have a downside. His epiphany occurred while he was preparing to take his medical board exams to renew his license as a dermatologist.

As part of his studies, Dr. Chang had to brush up on autoimmune diseases, memorizing the names of human proteins that can be targeted by a misdirected immune system. When he looked at the list, he was surprised to see some familiar names.

When Dr. Chang isn’t working as a dermatologist, he researches the X chromosome in his lab. He noticed that many of the proteins involved in autoimmune diseases also helped Xist silence the X chromosome.

Maybe, Dr. Chang thought, that was no coincidence.

The new study emerged from years of research testing his hunch that Xist molecules could cause autoimmune disease. He and his colleagues studied a strain of mice in which the females are at high risk of the autoimmune disease lupus, while the males never develop severe cases.

The researchers genetically engineered the male mice so that they, like the females, produced Xist. “Once the male mice express Xist, they get much worse levels of immune disease,” Dr. Chang said.

The researchers also found that people with lupus or two other autoimmune disorders had high levels of antibodies to Xist-related proteins in their blood.

Sunday, February 4, 2024

Researchers Seeking Black Americans with MS to Participate in Genetics Studies

 Help Find Clues to the Cause and Treatment of MS
 
Researchers at the University of California MS Genetics Project are studying how MS affects Black Americans with MS. The university maintains a unique repository of DNA and other biological materials with the support of the National MS Society.

Why Does This Matter? New research shows that more Black people are diagnosed with MS than previously thought and that they may have a different disease course. Genes are known to play a role in determining who is susceptible to developing MS and may also influence the severity and course of the disease. Identifying the exact location of MS genes could help determine who is at risk for developing the disease and may provide clues to its cause, prevention, and better treatment.
Focusing on Black, Hispanic/Latinx, Northern European, and other ancestral groups, and searching for what is common and what is different in their DNA sequences may help identify the precise genetic variants that contribute to MS.

What is involved?  It is not necessary to travel to San Francisco to participate in this study. Once an individual has completed the initial online intake form and has agreed to participate, they are emailed the links to two additional online forms and sent a kit via express mail.

The kit includes a consent form, a health information privacy form, and a medical records release form. The kit also includes everything necessary for the blood draw, which can be taken to your local Quest Diagnostics Lab, where the blood can be drawn and then returned in a prepaid envelope to the UCSF MS Genetics Lab. There is no cost to the study participants. 

Individuals recently diagnosed with MS living in the San Francisco Bay Area are also eligible to participate in an MRI study to identify relationships between genetic profiles and tissue damage in the brain and spinal cord.

Please note: this study cannot enroll international participants at this time.

Contact: 
To participate or request additional information, please complete this brief intake survey.

OR you may contact the UCSF DNA directly:
Clinical Research Coordinator
UCSF Multiple Sclerosis Genetic Susceptibility Project
675 Nelson Rising Lane, Suite 235A, Box 3206
San Francisco, CA 94158
Email: msdb@ucsf.edu
Website: https://msgenetics.ucsf.edu/

Saturday, December 30, 2023

Promising Experimental Treatments for Multiple Sclerosis

 

What’s on the horizon for people with multiple sclerosis? Dedicated doctors, scientists, and volunteers are working today to answer that question and find tomorrow’s breakthroughs.

Several experimental treatments are being studied to figure out whether they’re safe and effective for people with different kinds of multiple sclerosis (MS) and at different points in their journey.

The main research goals are to find new ways to stop MS from getting worse or even to reverse nerve damage and the disability that can come with it. Eventually, the hope is to end MS forever.

That’s a tall order for sure, but progress is being made in laboratories and medical centers all around the world.

Resetting Your Immune System

When you have multiple sclerosis, your immune system attacks your central nervous system. So what if doctors could flush out your “bad” immune system and give you a new one? That’s the basic idea behind a type of bone marrow transplant called autologous hematopoietic stem cell transplant (AHSCT).

How does this work? Thrower explains it this way:

  • Immature stem cells made in your bone marrow are removed from your blood.
  • These cells are sort of cloned and many copies are made.
  • The bad immune system’s “hard drive” is wiped clean with high-dose chemotherapy.
  • The immune system is rebooted with the fresh stem cells that don’t attack your nervous system.

Since they’re your cells, they can’t be rejected. But it will take your body about a month to replace your immune system. That puts you at risk of potentially life-threatening infections, including COVID-19 and others.

The procedure is not new but not approved by the Food and Drug Administration. It could be soon, says Ben Thrower, MD, a neurologist and medical director of the Andrew C. Carlos MS Institute at Shepherd Center in Atlanta and senior medical advisor for the Multiple Sclerosis Foundation.

In fact, the National Institutes of Health is sponsoring a clinical trial comparing AHSCT against the most widely used and effective treatments for relapsing-remitting MS.

Even though AHSCT isn’t approved, experts know a lot about the best candidates for this ambitious therapy. It’s most successful in people with aggressive relapsing-remitting MS who are under age 50, according to Thrower.

This is the same procedure actress Selma Blair had in 2019, he adds. Her journey is the subject of a 2021 documentary called Introducing, Selma Blair.

Talk to your neurologist about whether you should try AHSCT. Many Americans go to other countries for this treatment.

Other New Stem Cell Approaches

Doctors are exploring other stem cell approaches. One stem cell transplant therapy being tried at Atlanta’s Shepherd Center is intended to treat all types of MS: relapsing-remitting, primary progressive, and secondary progressive. The procedure uses what’s called mesenchymal stem cells. It may be able to repair damage and reverse disability.

Mesenchymal cells are more mature than embryonic stem cells, which have a better ability to repair but are risky. “Once you put embryonic cells into the body, you lose control and you can’t take them out once they’re in. They can turn into cancerous cells or tissue you don’t want them to develop into,” Thrower says.

“Embryonic stem cells are like a genie in a bottle, you don’t know whether you’ll get a good genie or a bad genie,” he says.

Mesenchymal cells offer more control and are safer to use. The trial in Atlanta infuses these cells into volunteers through a vein. Unlike AHSCT, it doesn’t destroy the immune system.

But the jury is still out on this approach. It’s only in the first phase of research, so it’s years away from becoming an approved treatment.

Monday, December 25, 2023

Ways To Help Advance MS Research

 Researchers are committed to finding solutions for everyone affected by MS — the very people who hold the key to the answers. Without participants in research studies, MS research would come to a standstill.
 
People with MS, and sometimes family members, can help advance MS research by:

  • responding to surveys online
  • sharing their voices and ideas through NARCOMS and iConquerMSTM, organizations that amass volunteer-submitted information
  • volunteering for clinical trials and other studies
  • donating DNA from saliva and blood samples
  • arranging for brain or spinal cord tissue donation to a tissue bank; this type of donation is incredibly valuable and truly appreciated by all who are involved in moving toward a world free of MS.  Blood samples also can be donated for use in MS research studies.

Assess each opportunity and make an informed decision before agreeing to participate — understand the possible benefits and risks. See our Guide to Participating in Clinical Trials.

Everyone can get involved to support research investment, or advocate so that Congress provides funding for MS research and supports other efforts such as understanding incidence and prevalence

 

Participate in a Clinical Trial

Clinical trials help to determine if treatments and other interventions are safe and effective. Studies enrolling diverse populations are monitored to ensure that the rights and safety of all participants are protected. Without the participation of people with MS, it would be impossible to develop new and better solutions.

Learn More

Surveys and Other Research Studies

Conducted by investigators seeking to answer scientific or health policy questions about MS, or by pharmaceutical or medical device companies aiming to develop or improve products for people with MS.

Participate Now

Participate in Genetic Studies

By donating DNA from blood samples, you are helping research that could lead to ending MS forever. Learn more about genetic studies and how you can participate.

Give DNA

Donate to Tissue Banks

People living with MS may hold the key to finding a cure. Learn more about tissue banks and donating brain and spinal cord tissue for researchers studying MS.

Read More

COVID-19 Studies Recruiting People with MS

Explore opportunities for participation in research studies seeking to understand the impacts of COVID-19 and how the vaccine can affect people living with MS.

Learn More

Research Studies: Newly Diagnosed with MS

If you are new to MS, you have the chance to help advancements in MS research. Discover studies researching the earliest stages of MS looking for participants.

Learn More

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NARCOMS Patient Registry

Register as a willing MS research participant to facilitate multicenter studies. Initiated by the Consortium of MS Centers.

Visit NARCOMS

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iConquerMS™ Online Portal

Share information and ideas for research topics important to you. Each contribution and suggestion brings us closer to faster diagnoses and improved treatments.

Visit iConquerMS™

 

Friday, November 3, 2023

MS in the Fall and Winter: 5 Ways to Stay Well

 

From: WebMD

 

After the hot, humid days of summer, the colder temperatures in the fall and winter can come as a shock to our bodies. If you have a condition like multiple sclerosis (MS), cold temps can make your symptoms worse and make you flat-out uncomfortable. You might find that it’s harder to move your limbs, you get more muscle spasms than normal, or your muscles feel tighter.

Doctors aren’t sure why cold temperatures make MS symptoms worse. But they think that the condition can alter the way you feel temperature changes. 

If your symptoms get worse in cold weather, it’s usually for a short time. A few simple tips can help you stay comfortable and warm in the fall and winter.

Try to get moving. When you have MS, there may be times when you find you can’t move around as easily as you’d like. When you can, try to get some moderate physical activity like walking or stretching. It’ll help you burn energy and warm up.

Dress in layers. This will help keep you warm. And if you get too hot, you can easily remove layers and stay comfortable. When it’s very cold, it’s a good idea to wear hats, thick socks, or lined boots. This will keep heat from escaping through your head or feet.

Keep your hands and feet warm. Doctors believe that MS can cause blood vessels in your hands and feet to overreact to cold temperatures. If you have MS, you may also be at risk for Raynaud’s phenomenon, a condition in which your fingers and toes lose heat. They turn from white to blue to red as the blood begins flowing again. You may feel numbness, pain, or like someone is sticking you with pins and needles.

To protect your hands and feet from the effects of the cold, try wearing hand warmers or using a heating pad. But don’t place the heating pad directly on your skin. It could cause burns or blisters.

Warm your insides. The easiest way to do this is to eat hot meals like soup. You can also sip hot drinks like tea or coffee. Pour them into an insulated mug to keep them warm longer and help limit your trips to the kitchen.

Get some sunshine. Even on crisp fall and cold winter days, who doesn’t love the feeling of sunshine on their shoulders? Step outside and soak up some rays. You’ll warm up, and you’ll help your body make some much-needed vitamin D. An added benefit? A little sunshine might help boost your mood.

Monday, October 23, 2023

What to Know About Lesions and MS

Multiple sclerosis (MS) is an autoimmune disease. For people with MS, the immune system mistakenly attacks the protective covering on nerve fibers. This covering is called myelin.1

The attacks by the immune system lead to the formation of lesions in the central nervous system (CNS). Lesions are areas of damage or inflammation.1

What are lesions?

The myelin sheath is a layer around the nerves. It allows for efficient transmission of signals between the brain, spinal cord, and the rest of the body. When the myelin is damaged, the nerve signals become disrupted and neurons can degenerate. This can lead to various MS symptoms.1,2

A lesion is a damaged or scarred area. In MS, they are caused by the inflammation from the immune system attacking the myelin. Lesions are sometimes called plaques. Not all lesions in the CNS are caused by MS. But lesions are an important sign of MS. Doctors use the presence and location of lesions to help diagnose and track MS.1,2

MS lesions can occur throughout the CNS, including the brain, spinal cord, and optic nerves (the nerves that transmit signals from the eyes). Lesions are caused by focal inflammation that results in damage to the myelin and nerves. This damage ultimately leads to scar tissue. Lesions can vary in size and location. Lesions can be detected with imaging techniques such as magnetic resonance imaging (MRI).

What do lesions look like on MRI scans?

Doctors use MRI scans to look for lesions. In MS they often use an MRI scan with contrast. This means they inject a contrast fluid that contains gadolinium. The gadolinium shows up white (“lights up”) on certain MRI sequences where inflammation is happening. So, doctors look for white patches on these MRI sequences to detect active lesions with inflammation. Lesions older than 3 months typically will not light up with gadolinium.

While gadolinium only highlights newer lesions with ongoing inflammation, other MRI sequences can reveal all lesions, new or old, without any gadolinium. Combining these different MRI techniques allows doctors to identify both newer active and older inactive lesions.

Over time, some lesions may show up as a black spot on some MRI sequences. This means the CNS tissue has suffered so much damage that it completely degenerates or disappears. Some lesions have been shown to grow slowly over time. These are called chronic active lesions or smoldering lesions. Research shows that smoldering lesions may be a risk factor for progressive MS.

How are lesions used to diagnose and monitor MS?

Lesions play an important role in the diagnosis and monitoring of MS. Diagnosing MS often involves imaging, like an MRI, to look for signs of damage in the CNS. But MS is not the only cause of lesions. Radiologists review every MRI and look for signs of diseases. An MRI report may include lists of all possible conditions that could explain the results.

An MRI with lesions does not mean you definitely have MS. For a final MS diagnosis, a doctor will typically use a physical exam and questions about your medical history. They may confirm the diagnosis or rule out other conditions with other tests like bloodwork or a spinal tap.

If you are already diagnosed with MS, your doctors may use MRI images to look for evidence of ongoing disease activity such as new lesions. Current MS disease modifying therapies help prevent development of new lesions. New lesions on an MRI might suggest your current therapy is not working for you. MRIs taken over time can also show changes in old lesions. Sometimes old lesions can shrink or fade overtime. If lesions are growing or spreading, it may mean you need to consider new treatments.

If you are getting multiple MRIs over time of the same area of your body, try to get the MRIs at the same facility. This helps with tracking because the MRI machine and technique will be more consistent.

You may have access to MRI results before meeting with your doctor. But it can be a good idea to wait to review results with a professional. Doctors are trained to interpret the results and can address any concerns you may have.

 

 From: https://multiplesclerosis.net/clinical/what-are-lesions?utm_confid=32f64fac94bd683a885744accd9fcdfdb16ae862446753ab1f7cc160d11f8d21&utm_term=Article_1_Button&utm_source=ActiveCampaign&utm_medium=email&utm_content=Understanding%20MS%20Lesions&utm_campaign=MultipleSclerosis%20net-Newsletter-10%2F19%2F2023