Tag: diagnosis

Washington’s archbishop reveals cancer diagnosis, will undergo surgery – WTOP News

A Catholic leader in the D.C. area will undergo surgery next week to remove a cancerous growth.

A Catholic leader in the D.C. area will undergo surgery next week to remove a cancerous growth.

Cardinal Robert McElroy, the eighth Archbishop of Washington, has been diagnosed with liposarcoma, and he will have the cancer surgically removed on Nov. 13, the Archdiocese of Washington said in an update on its website Wednesday.

The statement said that McElroy’s prognosis is good, as the cancer is nonaggressive and tends not to metastasize.

“I am at peace with this challenge and hope and believe that in God’s grace I will be Archbishop of Washington for many years to come,” the 71-year old said in a statement. “I ask your prayers and support in these days and plan to resume full duties two weeks after the surgery.”

McElroy was appointed to the Archdiocese of Washington, which includes D.C. and several Maryland counties, by Pope Francis in January. He became a cardinal in 2022.

In 2010, McElroy was appointed as an auxiliary bishop in San Francisco by Pope Benedict XVI, and in 2015 he became the sixth bishop of the Archdiocese of San Diego.

He was born in San Francisco, and attended Harvard College in 1972. He obtained a masters in divinity at St. Patrick Seminary in 1979.

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Jeffery Leon

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November 5, 2025
What to Know About Multiple Myeloma

If you or a loved one has just learned they have multiple myeloma, the diagnosis may come as a surprise. Chances are that you don’t know much — if anything — about this type of cancer, so you’ll likely have a lot of questions for your doctor as you take in the news and begin to make decisions about your treatment.

“The majority of patients have never heard of multiple myeloma,” says Krina Patel, MD, a myeloma specialist at MD Anderson Cancer Center. “They’ve all heard of melanoma [skin cancer]. The first thing we tell them is that multiple myeloma is a blood cancer.”

This lack of familiarity often makes a multiple myeloma diagnosis more difficult emotionally than other cancers. “This is a rare cancer and most patients have never heard of it before their diagnosis,” says Urvi Shah, MD, a myeloma specialist at Memorial Sloan Kettering Cancer Center. “It is more anxiety and stress because you don’t know what to expect.”

“Patients come in and ask, ‘What is my stage?’ They want to know if it’s early or late and what is going on,” Shah said. “But with myeloma and many blood cancers, it’s different. It’s not like solid tumors, and this causes confusion for patients.”

Because myeloma is a blood cancer, doctors don’t stage it in the same way they do with solid cancers like breast or prostate cancer. Blood cancers are in the blood and are therefore everywhere in the body. But that doesn’t necessarily mean that your cancer is worse or harder to treat. In the case of multiple myeloma, Patel says, “there’s not really a metastatic version.”

Doctors do use a staging system that’s based on blood test results and other things to tell them if the cancer is high risk or not. Those test results can help you and your doctors understand what to expect and how to best treat the myeloma. No matter the stage, multiple myeloma is considered a lasting (chronic) condition.

“Multiple myeloma is considered incurable and a long-term issue,” Shah said. “Now with the latest therapies, we are curing a small subset but not the majority. We still tell patients it is most likely incurable. I hope that will change in the near future. We’re coming close, but we’re not there yet.”

Even though multiple myeloma is almost always a lifelong condition today, there has been lots of progress in treating multiple myeloma in recent years. A person diagnosed with multiple myeloma will have lots of good treatment options.

“Sometimes patients know it’s not curable and get depressed,” Patel said. “They don’t realize at this point it is very treatable. We can’t cure the majority. But we can prolong life for years to decades with therapy that’s tolerable. They’ll be on therapy for the rest of their lives, but treatment doesn’t only prolong life. Quality [of life] is just as important.”

Myeloma treatment typically involves a combination of drugs. Patients newly diagnosed with multiple myeloma are often in pain and tired as a result of anemia, bone lesions, or other complications of the disease. Treatment doesn’t just fight the cancer, but it will often make you feel better, too.

“Most people, when they think of chemo, think of hair loss, nausea, staying in bed all the time,” Patel said. In multiple myeloma, it isn’t like that. “Treatment is really a way to improve quality of life.”

When people first come in, Shah says, “They may have had a delayed diagnosis. They may come in in a wheelchair.” Once treatment is started and the cancer responds as it usually does, she says, those same patients often are up and walking again.

When you have a new diagnosis of multiple myeloma, it’s a good idea to get to a specialist early on, says Jason Valent, MD, a myeloma specialist at the Cleveland Clinic.

“It’s a little easier for somebody like me because I only take care of myeloma patients,” Valent said.

Given many treatment options, new drug approvals, and ongoing clinical trials, it helps to have a specialist who’s on top of new developments as they come. A community doctor may see only a few myeloma patients per year compared to hundreds at a larger cancer center with myeloma specialists. While a doctor close to home can oversee day-to-day care when a larger center isn’t nearby, a specialist on your team can help guide treatment and consider all the options from afar, including new treatments.

“Even if you can’t see a specialist every month, it’s a good idea to have them in the background, especially at points of treatment decisions,” Patel said.

While multiple myeloma is unique, in some ways it’s similar to other cancers. Anytime there’s a new cancer diagnosis, there’s a lot to take in, learn, and consider. In addition to decisions about the cancer and its treatment, you’ll have personal choices to make, including who you want to tell about your diagnosis and when. There will be practical considerations, too, including learning what your insurance will cover and what it won’t.

“Any cancer diagnosis is a life-changing experience,” Valent said. “The emotions that go along with that can be some of most difficult things to deal with.”

Ask if your care team includes or can recommend counselors, psychologists, social workers, pain specialists, or others who can help you with various aspects of the disease and its care. As you face a new diagnosis of multiple myeloma, Shah recommends finding other things to focus on outside of the cancer and its treatment.

“Those who keep up a job or hobby and don’t let the disease define them seem to better manage,” Shah says. “It’s a marathon. Those who fixate and focus on the disease can suffer lots of anxiety and stress.”

“You’re going to be on some form of treatment for the rest of your life,” Valent said. While that’s different from many other cancers, “we treat myeloma in some ways like diabetes. You may take a pill or a shot for the rest of your life, but it’s reasonable to expect to keep the disease controlled, hopefully for long periods of time.”

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July 27, 2023
BIPOC With Ankylosing Spondylitis

BIPOC With Ankylosing Spondylitis

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December 14, 2022
Early Diagnosis and Why It Matters

From the minute we wake up until we go to sleep, our eyes help us navigate the world. Like a finely tuned camera, each part of our eyes has a very specific job to do.

What Is Inherited Retinal Dystrophy (IRD)

Our dome-shaped cornea, the front layer of the eye, allows light to pass through and bends it to help us focus. Some light enters though the small opening of the pupil. How much light the pupil can let in is controlled by the iris, the colored part of the eye. That light then travels through the lens of the eye, which works together with the cornea to focus light on the retina. The retina, located at the back of our eye, is light sensitive. It contains special cells called photoreceptors that turn light into electrical signals that go to your brain and changes those signals into the images you see.

Sometimes things can go wrong with one of the parts of our eyes. A rare group of disorders affecting the retina are called inherited retinal dystrophies (IRDs.) These groups of diseases are hereditary, meaning they are passed down through families. The cause is mutations, or malfunctions, in at least one gene that is not working properly. There are around 300 known to play a role in these diseases.

Some IRDs may progress slowly, while another may change vision much more quickly. Some may lead to vision loss.

Why Is Earlier Diagnosis of IRDs Helpful?

“It’s important to understand these diseases are rare, relatively speaking. But for the people who have an IRD, it can be life-changing,” says Shree Kurup, MD, FACP, a retinal specialist at University Hospitals Cleveland Medical Center. “But what’s important to know is that early diagnosis of any one of these diseases can absolutely improve lives. We may not be able to cure every IRD, but we are making significant progress in learning more about the several hundred genes that can cause them.”

There are more than 260 genes that can cause IRDs. But getting a diagnosis is more involved than a routine eye exam. “There can be a lot of reasons for blurry vision, and an IRD is not going to be the first thought of any eye doctor,” says Matthew MacCumber, MD, PhD, a retinal specialist at Rush University Medical Center. There is a great amount of variety among all IRDs, so it can be tough to make an accurate diagnosis. “Sometimes patients may be misdiagnosed for years and when they finally get a firm, accurate diagnosis it’s almost a relief because they can finally put a name to their problem,” MacCumber says.

To make a diagnosis, doctors rely on a battery of specialized tests that give them information on many aspects of your vision. A genetic test will tell you exactly what genetic mutation you have and can help your doctor confirm your diagnosis. It will also give you and your family important information about your disease, how you may need to plan for your own future, and how it may affect other family members and future generations.

“It’s important to spend a lot of time with people to explain how an IRD may change their lives,” MacCumber says. “An early diagnosis also gives patients access early on to a team of experts that can help them.” That team is made up of ophthalmologists, optometrists, retinal specialists, genetic counselors, and other experts in low vision.

Early Diagnosis and Clinical Trials

An early and accurate diagnosis also can help you enroll in a clinical trial. This will give you the chance to try new therapies before they’re available to the general public. Although almost no IRDs have treatments right now, doctors are hopeful about the future of gene therapies. In clinical trials of one such therapy, patients reported that they were able to get rid of some devices designed to help those with vision loss see faces and read.

“Gene therapy is the future of IRDs, and we’ve come a long way in genetic testing, We are learning more and more about these diseases. I absolutely, 100% recommend that patients participate in a clinical trial if they are eligible. This is the way we will find cures,” MacCumber says.

The most important thing for the majority of people with IRDs right now is to not lose hope. “Imagine how hard it can be for a parent to hear their child may lose their sight or how hard it is for an active adult to hear they may have to change things in their life,” Kurup says. “IRDs are very complex, but each patient is an individual. For these people, knowledge really is power, and the earlier they get that power the better.”

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November 21, 2022
Being Diagnosed With Inherited Retinal Dystrophy

By Shaini Saravanamuthu, as told to Kara Mayer Robinson

When I found out I have retinitis pigmentosa (RP), a type of inherited retinal dystrophy, I was shocked.

Nobody in my family has vision problems. I had some trouble with my vision, but I thought it was because of bad lighting or simply because eyes weren’t meant to see well in the dark.

After my diagnosis, my struggle to see at night made sense.

My Diagnosis

I discovered I had retinitis pigmentosa after I switched to a new optometrist. He caught it in a routine check-up. He had taken a picture of my retina and saw pigment deposits.

My optometrist referred me to an ophthalmologist right away. I did several visual field tests and had scans of my retina. My doctor asked questions about my vision and when I noticed symptoms. They also asked about my family history.

I have a South Asian background. My family is from a country where they didn’t have medical records and didn’t talk openly about illnesses or disabilities. This made it difficult to know if anyone in my family suffered from eye diseases or vision loss.

I only really got an idea after I had genetic testing. I found out both my parents were carriers. They told me that a gene had mutated, and that’s how I got RP. My gene mutation still hasn’t been identified, but I did find out that I won’t pass it down to my kids, which is a relief.

I saw two different ophthalmologists before I got the final diagnosis. I was told I’d need a specialist to follow me and track the condition. My doctors said that as time passed, I’d lose more vision. They told me to be patient, take vitamins, and hope for the best. They also said there was no cure.

What Will My Future Be Like?

Finding out I had RP was heartbreaking and terrifying. My main concern was how quickly my vision loss would happen. I wanted to know if there were any treatments to reverse it. I also worried about passing it down to my future kids. I had a lot of questions. Would I be able to continue my normal life? What will happen to my career? How will dating look?

That was in 2011. But it’s a whole different ball game now. There are so many more studies and clinical trials being done and there’s more awareness about inherited retinal dystrophy. There’s much more hope now.

The science and technology side of it is very exciting. Even if it’s not in my lifetime, I’m pretty confident that in the next few generations, people who are diagnosed won’t have to hear the horrible words, “Sorry, there’s no treatment for RP.”

Living With Retinal Dystrophy

At age 31, I’m now legally blind and a person with a disability. I have severe night blindness and limited peripheral vision.

In 2020, I discovered a hole in my right eye that created more vision problems. My doctors were able to patch the hole using an amniotic membrane. The vision hasn’t come back, but the risk of a retinal detachment is gone. I’m hoping the lost vision from the hole slowly comes back.

Now I just take it day by day. I do better during the day and in well-lit places. My biggest struggle is at night or in low light, where I don’t see at all. I have trouble with stairs, so I take my time, especially when I go down any stairs in public places.

I work off my memory a lot. Memory and flashlights are my best friends.

So are my friends and family. They’re a huge support. They help guide me in the dark and bring me places when public transportation isn’t an option. I no longer have a driver’s license, so it’s a big help.

When I go out, I usually go with my sister or friends. I’ll stick to places where I’ve already been and where I’m comfortable using public transportation by myself. I’m planning to learn how to use a white cane, which is a mobility device, to get my independence and confidence back in dark settings.

A Brighter Outlook

It’s getting better with time. It took me about 4 years to embrace this new journey, with the help of my therapist and my genetic counselor.

Joining online support groups, like those on Facebook, and following people on social media who are thriving with vision loss have been a big help. I love the community I’ve come to know across the world. Our visually impaired community is so strong and resilient. It’s very inspiring.

It may seem like everything is going wrong when you first get a diagnosis, but with time you can learn to embrace the journey. This diagnosis led me to a whole new community that I wasn’t aware of, and it has opened my eyes, no pun intended, to so much.

I’m grateful for my journey and can’t wait to see how much more the vision research world will grow and innovate in the coming years. My advice to others is to have faith and take it day by day.

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November 21, 2022
Talking to Your Kids
There’s a lot to think about when you find out that you have autosomal dominant polycystic kidney disease (ADPKD).

When do you start treatment?

Will your daily life change?

How will it affect your kids?

That last one can be really tough. But Jillian Warejko, MD, a pediatric kidney specialist at Yale Medicine, says it’s important for kids to learn what to expect.

“There’s a lot of power in knowing your own health history,” Warejko says. “So we try to teach kids to empower themselves and advocate for themselves.”

You should tailor your conversation based on your child’s developmental age. And you may want to space your talks out over time.

Here are some topics to get you started.

How You Get It

If your kids are teenagers or young adults, you can break down the basics of this autosomal dominant genetic disease. Warejko explains that a faulty gene on a non-sex chromosome causes ADPKD. That means that whether your child is male or female, there’s a 50% chance they’ll get this mutated gene from you. And if they have the disease, there’s a 50% chance they’ll pass it on to their kids.

You may need to give younger kids less information. You can still bring up ADPKD. But use age-appropriate terms that aren’t scary.

“You don’t want kids to be fearful,” Warejko says. “Fear can make people not want to go to the doctor.”

In her practice, Warejko describes ADPKD like this:

“It sounds like a couple of family members have had this illness called kidney disease. And the reason you’re visiting with me today is because we want to make sure that, if you have kidney disease too, we’re doing everything in our power to make sure you stay as healthy as possible.”

She also tells kids that it’s best to treat this disease early, when their kidneys are “good” and still work like normal. And the best way to do that, she says, is to “make sure that you’re checking in with us.”
Symptoms to Watch For

If your kids have ADPKD, they might not have any problems when they’re children or young adults.
“The disease can be relatively quiet in those early years,” says Neera Dahl, MD, PhD, a kidney specialist with Yale Medicine.

With that said, Dahl thinks parents and kids should know what to watch for.

Tell your child to speak up if they notice:

Back or side pain

Blood or pain when they pee

Any other urine changes

Frequent headaches

Encourage your kids to keep track of their health details.

“If the doctor tells them their blood pressure is a little high, take down that number,” Warejko says. “Everyone has a piece of ‘paper’ wherever they go because our phones have ‘notes.’”

You can also share what the disease feels like for you. But keep in mind that your child may not have the same experience.

“The tricky thing about ADPKD is that everyone is a little bit different, even among family members,” Warejko says. “But I always encourage families to be open with one another.”
When and How to Get Diagnosed

Children may only need regular wellness visits once a year. But their doctor should check for high blood pressure or blood in the urine.

“If those are off, that’s a reason to investigate further,” Dahl says. “Otherwise, it’s OK to monitor kids to see how they’re doing.”

Warejko stresses the importance of annual checkups throughout the late teens and early 20s. Sometimes young adults who might have ADPKD skip these screening tests, she says, because they feel healthy. Though they could have high blood pressure or cysts and not know it.

“One of the hardest parts about kidney disease is you don’t feel it until you feel it,” she says.

To diagnose ADPKD, you may get:

Imaging tests. The most common one is an ultrasound, Dahl says. It’s a painless test that can take pictures of the urinary tract or kidneys. Other imaging tests include a computed tomography (CT) scan or magnetic resonance imaging (MRI).

Genetic testing. This is a surefire way to know if you have ADPKD. But it might not be the right choice for everyone, especially young kids. “There’s a lot of debate about what it means to genetically test someone who’s under the age of 18, when they’re not at an age that they can fully consent,” Warejko says. “Not every person wants to know what their genetic predisposition is.”
Ask your doctor to refer you to a genetic counselor. They can help you figure out if this is something you or your family might want to do.

Pre-implantation screening. This is for your adult kids who want to start a family. People who use in vitro fertilization (IVF) can get a special test to check for ADPKD in fertilized eggs. It’s not 100% accurate. But it can be a choice for people who want to take steps to lower the odds that they’ll pass on the gene, Dahl says.
Set a Good Example

You can teach your kids some healthy habits to protect their kidneys. If they ask why, tell them you want to help them achieve their goals. That’s what Warejko does. She asks kids what they want to be when they grow up. Then she tells them, “I want you to be successful, and part of that is being healthy.”

Her tips include:

Drink plenty of water.

Eat a low-salt diet.

Get enough physical activity.

Eat lots of fresh fruits and vegetables.

Avoid processed and fast foods.

Warejko knows it’s not easy for everyone to make these healthy changes. Some families may not have access to fresh produce or live in a neighborhood where it’s safe to go for walks. That’s why she makes an effort to brainstorm with kids and parents. She’ll help them find ways to get healthy food or exercise in their home. “I try to specifically ask, ‘What are the restrictions we need to work inside?’”
Life With ADPKD

Treatment has come a long way in recent years. In 2018, the FDA approved tolvaptan (Jynarque), the first drug to treat adults with ADPKD. It can slow down cyst formation on the kidneys.

“I think tolvaptan is going to change the trajectory and we’re not going to see as many people ending up with kidney failure,” Warejko says. “My hope is that snowball will continue to roll downhill.”
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November 21, 2022
How I Took Control of My MS With Healthy Habits

By Laura Wells, as told to Rachel Reiff Ellis

When I was diagnosed with MS at 39, I would say my focus on my health was sporadic. I had young kids at the time, and my diet and exercise habits were all over the place. Before kids, I’d jog a few times a week, or get on the treadmill or bike. I’d also work in some weight training. But after the kids came along, I no longer did much regular physical activity. I was focused more on my kids’ schedules and needs than my own.

Once the kids were older, I began to have more time and attention for healthy eating, but my worsening MS symptoms were a real barrier to moving my body the way I once could. Because of my fatigue and balance issues, I could no longer jog or even go for long walks. So I started trying to figure out what I could do for myself. I decided to turn to yoga — something I used to do years ago.

I started by going to classes twice a week, but even that got hard for me, because keeping myself steady is so challenging. I was constantly worried that I might fall over and embarrass myself trying to do a Standing Warrior pose. And then I discovered one-on-one sessions. My instructor was so good about modifying any pose I needed help with. She’d show me how to use a wall or chair for support. These changes in my yoga practice meant I could do a little bit of exercise daily, which has turned out to be an important key to my well-being.

When I challenge my body to do small spurts of intentional movement every day, it keeps me stronger both mentally and physically. It’s very easy to go down the rabbit hole thinking about all the things you can’t do when you have MS. So if I can do even just 15 to 20 minutes of yoga a day, it can go a long way.

I’m also fortunate that I live in an area with access to a physical therapist who specializes in MS. She’s been amazing at showing me exercises that can strengthen the weak parts of my legs and help me work on my stability.

When it comes to healthy eating habits, my philosophy has always been everything in moderation. I know a lot of people who have tried special diets, but I just try to fill my plate with a lot of fruits and vegetables and whole grains, and eat fewer packaged and processed foods. My downfall is my sweet tooth, which I’ve always had. And sugar causes inflammation, which can ramp up MS symptoms. But being aware of how foods make me feel helps a lot. I know that I feel better when I eat a salad for lunch instead of something carb-filled. So I try not to overdo it in any unhealthy category.

It’s funny, because while MS has worsened my physical balance, it’s forced me to find balance in my day-to-day life. I’ve always been someone who feels guilty if I’m not doing or helping, or being productive. But it’s become clear that it’s not only OK to relax, it’s necessary. Fatigue is one of the main symptoms of MS, and being more mindful of my activity levels is one of the ways I keep my stress low and help manage that symptom.

It’s no longer an option for me to stay up too late at night or pack my schedule so full that I don’t have downtime. If I don’t take time to sit still and read or listen to music, go for a relaxing stroll, or take a nap, I won’t be able to function. My brain will simply hit a wall. I call it “pea soup brain.” Now, I’m really good about going to bed at the same time every night, and taking a nap every single day. Not a long nap — just enough so my body can finish the rest of the day strong. I’ve learned that you have to take care of yourself before you can take care of anyone else.

I’ve also found that it’s important to celebrate small successes. The more I can embrace who I am and what I’m able to achieve, the better my mental outlook. If I’m able to do one more set of leg-strengthening exercises today than I was yesterday, that’s cause for celebration. It may not look like much to anybody else. But to me, it’s an accomplishment.

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October 17, 2022
Is It Dry Skin or Atopic Dermatitis?
For years, George Kramb, who’s 29 and lives in San Diego, CA, thought he had a severe case of dry skin.

“I had dry skin basically my whole life. It was always flaky, irritated, and even got to the point of cracking,” he says. Sometimes, in the winter, his fingers were so cracked and dry that he couldn’t open his hands.

Kramb tried over-the-counter ointments like Aquaphor, Cetaphil, and Gold Bond. “I used practically every single lotion and ointment that CVS sells, and nothing worked. It would offer temporary relief but didn’t address the underlying problem,” he says.

What Kramb didn’t know was that he didn’t just have dry skin. He had atopic dermatitis. “It wasn’t until I was a teenager and saw a dermatologist that I got a proper diagnosis,” he says.

What Is Atopic Dermatitis?

Atopic dermatitis (AD) is a skin condition where itchy rashes come and go. It’s usually associated with some type of allergy.
“Unlike dry skin, AD is a chronic inflammatory disease,” says Annabelle Garcia, MD, a board-certified dermatologist and owner of Sonterra Dermatology in San Antonio, TX. “Symptoms often appear as a rash on your skin. In its moderate-to-severe form, AD can cause constant itching, which can lead to cracking and bleeding of the skin.”

Common AD skin symptoms include:

Dry, discolored skin

Itching

Painful or sore skin

Rashes that may ooze fluid or bleed from scratching

Sleep problems from itching

Thick, hardened skin from scratching

Experts don’t know exactly what causes AD, but it may be related to your genes and environment. If you or your family members have asthma or allergies, you’re more likely to get AD.

“Atopic dermatitis typically begins in childhood but can appear at any age,” Garcia says. For some people, it tapers off when they get older. Others have it their whole life. AD may get better at times and then flare up at other times.
How Is AD Different From Dry Skin?

AD is more than dry skin. “While both dry skin and AD can make your skin flaky, AD can also include red or dark rashes and persistent itch that can lead to oozing and bleeding skin lesions,” Garcia says.

If you have AD, you may have an itch-scratch cycle. Your rash is itchy, so you rub or scratch your skin. That causes more irritation and itching, so the cycle of itching and scratching keeps going.

With AD, a chronic condition drives your symptoms, Garcia says.

Getting the Right Diagnosis

Atopic dermatitis can be difficult to diagnose, Garcia says. Your rash may look like psoriasis or poison ivy. If you have dark skin, it may be less noticeable, and it may take longer to get the right diagnosis.

If you have an itchy rash, see your doctor. “It’s important to know if you’re living with AD so you can take the necessary steps to control your skin health and find a proper treatment,” Garcia says. Topical creams may help with dry skin symptoms, but you might need a stronger treatment to target the cause.

Kramb had a feeling his dry skin could be AD because some flare-ups were severe. “My theory was confirmed when I met with the dermatologist, they prescribed my first steroid ointment, and it did wonders,” he says.

Treating AD

Finding a treatment that works for you is a process. If one doesn’t work, your doctor may recommend another.

It took Kramb a while to find the right mix. He tried a range of over-the-counter and prescription treatments, but they didn’t help. Later, he found that steroid ointments and creams work best.

Kramb says learning that his dry skin was atopic dermatitis inspired him to help others. He created PatientPartner, which helps people who have similar health conditions connect so they can learn from each other.

“A lot of people are nervous and scared to share their health conditions with others,” Kramb says. “I wanted to create a safe place for them to share with one another so they can learn and build a community.”

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October 17, 2022
Why Some Psoriatic Disease Symptoms Are Unreported

By David Chandler, as told to Kara Mayer Robinson

I’ve seen hiccups in the process of diagnosing psoriatic disease. I also know about it firsthand. I’m 62 years old, and I’ve had psoriasis since I was a teenager.

I first got it when I was 15. Not too long after that, when I was 17, I started to have pain in my lower back. I had years of appointments, doctor visits, and tests, but I didn’t discover that psoriatic disease had affected my joints until I was 30.

Once, when my psoriasis flared, I decided to see a dermatologist. They recognized I had joint inflammation and then referred me to a rheumatologist. It was then that I found out I had psoriatic disease involving my joints. So it took more than 10 years to get a proper diagnosis once I started to have symptoms.

My doctor didn’t connect my skin problems with the joint trouble I was having.

If you have psoriatic disease, the sooner you can get an accurate diagnosis, the better. In my case, the slow diagnosis meant I didn’t get the right treatment right away. That left me with joint changes and fused bones, mainly in my feet, back, and neck. Early diagnosis might have helped me avoid the disability that stemmed from that.

With psoriatic disease, it’s common for symptoms to be missed and diagnoses to take a long time. Symptoms often go unreported or overlooked for a variety of reasons.

I’ve learned that often comes from a lack of awareness about the link between the skin and joint involvement. You may think of skin lesions as an external disease and joint inflammation as an internal one. But actually, they’re both autoimmune disorders related to your immune system.

Why Psoriatic Disease Symptoms Get Missed

It’s common to misunderstand skin issues. You may think you have dandruff when it’s really scalp psoriasis. It’s also common not to report problems with your nails, which may be nail psoriasis. Your medical chart may reflect dry skin or eczema. If you see a new doctor, they might not think to ask about signs or symptoms of psoriatic disease.

You also may not think symptoms like joint pain, swelling, and fatigue have anything to do with your skin issues. That’s especially common with younger people, who are less likely to think that joint pain is something that can happen to them.

It’s best to let your doctor know about all symptoms you have.

Other Reasons Symptoms Get Missed

Symptoms of psoriatic disease also go unreported because they can often be vague. Test results or X-rays may not show anything. What you feel may not seem to change much over time. You might dismiss or doubt your symptoms because they’re not obvious or consistent.

Symptoms might also be intermittent — they may come and go. If you go to the doctor when things like joint pain or swelling aren’t happening, you may not think to tell your doctor about them.

What You Can Do

Report all symptoms to your doctor, regardless of whether you think they’re connected to your psoriasis. Make sure you consider symptoms you’ve had before, even if you don’t have them when you go to your appointment.

Think about your family history. Do any family members have conditions that might have gone misdiagnosed? Do they have symptoms that could relate to psoriatic disease?

Remember that psoriasis skin symptoms are a visual sign that something may be wrong with your immune system. So it’s possible you may have other issues, like joint pain and fatigue. If you’ve had these, talk to your doctor about the possibility of psoriatic disease.

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October 10, 2022
Opinion: Are Kids Being Set Up for Medical Abuse?

WANTAGH, N.Y., January 18, 2018 (Newswire.com)
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The recent news stories about Dr. Larry Nassar allegedly molesting as many as 125 young girls demonstrate that that we can’t always trust our clinicians. Yet, we live in a society where we too often hear, “No medical professionals wake up in the morning wanting to harm their patients.”

Child abuse by medical professionals is not common, thank goodness, but it does happen. That’s just one reason why Pulse Center for Patient Safety Education & Advocacy (CPSEA) goes into high schools and encourages young people to open up about their experiences and talk with each other about their patient/clinician relationships.

“This should be a relationship of trust where a young person can be treated with respect and dignity. . .”

Ilene Corina, President, PULSE Center for Patient Safety Education & Advocacy

By high school age, children should be prepared to visit their doctor alone. They need to share information that they may not want their parents or another adult to hear. This should be a relationship of trust where a young person can be treated with respect and dignity, can ask hard questions and disclose the most difficult concerns: depression, sex, drugs etc.

“I had an early encounter with two sisters who called their doctor ‘creepy’ during a teen discussion about medical care and preparing to see their doctor,” explains Ilene Corina, a patient safety advocate and educator for Pulse CPSEA. “This experience disclosed problems in the relationship so I started teaching patient safety to young people, with the support and guidance of qualified medical professionals.”

Other topics Pulse CPSEA addresses with classes as early as middle school are preparing for the doctor’s visit with questions; appropriately and fully explaining symptoms for the best diagnosis; and medication safety. The presentations are fun and interactive and leave classes recognizing the importance of becoming “Informed and Involved” patients.

To learn more about Pulse CPSEA and its school programs contact Ilene Corina (516) 579-4711 or e-mail icorina@pulsecenterforpatientsafety.org

Related stories:

http://abcnews.go.com/US/molestation-victims-coach-lashes-olympic-doctor-nassar-court/story?id=52404442

http://www.norwalkreflector.com/Health-Care/2016/12/29/Doctor-accused-of-violently-molesting-raping-1-200-children-recorded-abuse

http://www.nytimes.com/2008/08/06/us/06pediatrician.html

Source: Pulse Center for Patient Safety Education & Advocacy

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January 18, 2018