Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Sunday, 16 August 2026

How to Advocate for Yourself When You Have Psoriatic Arthritis

From everydayhealth.com

Inflamed joints, stiff hands, lower back pain, and fatigue — psoriatic arthritis (PsA) can be difficult to explain when many of your symptoms may be invisible. You might look fine while you're dealing with a flare that’s making everyday tasks like typing, cooking, or keeping up at work harder than they look from the outside.

That gap between how you look and how you feel can make it harder to get the support you need from your doctor, family and friends, and your employer. This is where self-advocacy comes in. It means communicating clearly about your symptoms, speaking up when you need changes to your treatment plan or daily responsibilities, and helping loved ones understand how your condition is affecting your life.

Medical Appointments: Plan Ahead

One of the most important places to advocate for yourself is at your doctor’s office.

Document Your Medical History

Appointments can feel short, so it helps to arrive organized and prepared to ask questions, says Joy Selak, PhD, the co-author ofYou Don’t Look Sick! Living Well With Invisible Chronic Illness, which she wrote alongside her rheumatologist. The book chronicles Dr. Selak’s decades-long journey with two invisible illnesses.

Selak brings a one-page document to her medical appointments, listing her diagnoses, current prescriptions, history of surgeries and medical interventions, and a notes section with questions or topics she wants to cover that day.

“Everything you can do to not take up appointments with data collection, but get right to what the concerns are, can lead to a more meaningful conversation,” she says.

Document which medications you’ve tried, and why they didn’t work, says Arthur Mandelin, MD, PhD, a Chicago-based rheumatologist and an associate professor at the Northwestern University Feinberg School of Medicine. “Without this information, insurance delays in getting access to the next or newest drug can be very lengthy,” Dr. Mandelin says.

Track Your Symptoms Between Appointments

Get specific when tracking your symptoms between appointments, says Alireza Meysami, MD, the head of rheumatology at Henry Ford Health in Detroit, where he specializes in diagnosing and treating inflammatory arthritis, including psoriatic arthritis.

“Patients are experts on how the disease affects their daily lives. The most helpful information is not simply where it hurts, but how it changes what they can and cannot do,” Dr. Meysami says.

Keep track of:

  • Joint pain, swelling or stiffness, and how long morning stiffness lasts
  • Fatigue and how it affects daily activities
  • Skin or nail changes
  • Flare-ups, including what may have triggered them and how long they lasted
  • Amount of prednisone being used, if any

Instead of saying “My pain is worse,” provide examples, such as, “I can’t type for more than 20 minutes” or “I had to stop walking my dog.” “These functional examples help us understand the true impact of the disease and make better treatment decisions,” Meysami says.

This is a crucial step if your doctor needs to fill out paperwork for workplace accommodations, Mandelin says.

Some people rate their pain and functional impairment on a scale of 1 to 10 — with 10 being worst — to help their doctors understand disease severity, Mandelin says.

Take Photos of Symptoms

When possible, take photos of swollen joints, psoriasis plaques, nail changes, or dactylitis (“sausage digits”), Meysami says. He says these details are “extremely valuable” because symptoms can improve before a doctor’s visit.

Push for Treatment Adjustments if Needed

If you have persistent joint pain, worsening psoriasis, or difficulty completing everyday tasks despite treatment, tell your doctor, Meysami says. “Patients should never assume they simply have to ‘live with it,’” he says.

Your rheumatologist can suggest another treatment option, including biologic therapies and targeted oral medications, he says.

Another important sign is needing frequent courses of steroids or relying on pain medications to get through the day.

At Home: Establish a Way to Ask for Help

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At home, self-advocacy often starts before you’re in the middle of a flare. Having clear, proactive conversations with family members can make it easier to ask for help when symptoms are flaring.

Have the Conversation Before You Need Help

Instead of waiting until you’re already overwhelmed, try explaining what PsA is like when you’re feeling well, Selak says. Sit your family down and explain what may happen during a flare up. “You need to get out in front of it on a good day. Then you’re both being realistic about what you can and can’t do and when you can and can’t do it,” she says.

That way, loved ones aren’t trying to understand your needs for the first time when you’re already depleted.

Break the ‘I’m Fine’ Habit

Saying “I’m fine” can feel easier than explaining pain or fatigue, especially if you don’t want to seem like you are complaining. But masking symptoms can leave family members unaware of what you’re carrying — and may lead to burnout, resentment, or less support than you actually need, Selak says.

“All of us who have had a chronic illness have done this, where you try to buck it up. There’s no upside to it,” she says. “Don’t pretend you’re okay when you’re not.”

Explain the Impact, Not Just the Feeling

When you’re living with an invisible illness, daily challenges aren’t as obvious as a broken bone or visible injury. But with PsA, common limitations include carrying groceries, typing, cooking, opening jars, climbing stairs, getting dressed, driving long distances, and even playing with the kids, Meysami says.

Instead of saying, “I'm flaring,” he suggests examples, such as, “My hands are too stiff to button my shirt,” “I’m exhausted after grocery shopping,” or “Walking upstairs feels like climbing a mountain today.”

“Describing symptoms in practical, real-world terms is one of the best approaches,” he says. It could be your family’s cue to understand it’s time to pitch in.

At Work: Formalize Your Accommodations

If managing work with PsA symptoms is becoming difficult, it may be time to advocate for yourself and ask for accommodations.

Learn Your Rights

Familiarize yourself with the Americans with Disabilities Act (ADA), your company’s HR policies around time off for appointments and sick leave, and resources available to you, Selak says.

Under the ADA, people whose PsA qualifies as a disability may be protected from discrimination, and you may be able to request reasonable accommodations. And if you can’t work due to your condition, you may be eligible to apply for disability benefits.

Ask for Specific Support

Before talking to HR or your manager, make a short list of what would help you do your job, Selak says. The Job Accommodation Network lists arthritis-related options such as voice-to-text software, typing aids, working from home, or scheduled breaks to stretch. Explain the limitation and a practical fix, Meysami says. “One of the biggest challenges with psoriatic arthritis is that much of the disease is invisible. Patients sometimes worry they'll be viewed as complaining or exaggerating because others cannot see what they're experiencing,” Meysami says.

With Friends: Educate Your Inner Circle

Friendships can become complicated when PsA affects your energy, mobility, or ability to keep plans. The key is to be straightforward, says Elizabeth Medeiros, who was diagnosed with juvenile psoriatic arthritis in 2010 when she was 14 years old, and has since blogged about life with the chronic condition.

Medeiros says her approach depends on the relationship. Long-time friends may already understand her limits and recognize when she needs to slow down, but with newer friends, she’s learned to be upfront about flares, needing to cancel, or adjusting plans.

“Being direct helps, like, ‘I’d really love to come to the museum with you, but the only way I can handle it is if I rent a wheelchair for the day. Is that something you’d be okay with?’” she says.

It also helps to offer another way to connect if you need to cancel, such as inviting a friend over for pizza and a movie or scheduling a FaceTime call instead, she says.

Get Support Beyond Your Rheumatologist

Advocating for your health also means asking for additional support, such as physical therapy or occupational therapy, Mandelin says.

“I refer any patient who asks, whenever they feel ready to ask, including the very first visit if that's what the patient feels they need,” he says.

An occupational therapist can recommend adaptive equipment, provide splints or braces, or teach joint protection techniques, while a physical therapist can help with mobility, flexibility, muscle strength and overall physical function, Meysami says. “Depending on the patient's needs, we may also involve dermatologists, pain specialists, psychologists, nutritionists, or social workers,” he says.

He says patients should feel comfortable asking questions like:

  • Would occupational therapy help me?
  • Would a hand splint or brace make daily activities easier?
  • Could physical therapy improve my mobility?
  • Are there support groups or mental health resources available?

Emotional support matters, too. Medeiros says therapy has been especially helpful during times when family and friends could not support her as much, or when pain and fatigue during flares made it harder to work through her emotions.

“Managing a chronic disease isn't about doing everything alone, it's about using the right tools and support to continue living a full and meaningful life,” Meysami says.

Thursday, 31 October 2024

USA: 5 Organisations That Can Help You Manage Psoriasis

From everydayhealth.com

These resources make it easier for people with psoriasis to navigate the road ahead

Psoriasis is more than skin deep. For the more than 8 million people in the United States who are living with this chronic skin condition, it can leave a lasting physical, emotional, and social impact.

Organizations that have expertise in psoriasis, as well as patient advocacy groups, can provide you with educational resources, offer practical tips for managing your daily tasks, and connect you with others who understand first-hand what you’re going through.

Whether you are newly diagnosed or have been managing the condition for years, check out these resources to help yourself navigate life with psoriasis.

National Psoriasis Foundation (NPF)

The NPF is a non-profit organization founded in 1967 that is now the lead patient advocacy group for people living with psoriasis and other forms of psoriatic disease, such as psoriatic arthritis. The organization is committed to finding a cure and improving the lives of people living with these conditions.

Along with providing educational information about diagnoses and treatment options, the NPF also offers free assistance for people with psoriasis, their families, and their caregivers through the Patient Navigation Center. You can call their center directly with any question at all — from how to find a specialist to how to handle insurance issues — or submit your question online to receive a response within three business days.

The NPF also hosts a One to One program, where they can connect you by phone, email, or text to another person with psoriasis who understands what you’re going through. If you’ve had psoriasis for a while, you can also volunteer to become a One to One mentor. 

One of the NPF’s major goals is to support research to find a cure for psoriasis — and in the meantime, optimize the health of everyone living with psoriatic disease. They host various community events to connect people with psoriasis locally (or virtually) while raising funds to support these initiatives.

You can also follow the NPF on: 

American Academy of Dermatology Association (AAD)

Founded in 1938, the AAD is the largest professional dermatology organization, representing over 20,500 experts worldwide. They’re committed to spreading awareness and finding treatments for psoriasis; promoting educational and research opportunities; and enhancing patient care for psoriasis and other dermatological conditions.

The AAD’s website offers information about psoriasis; tips for hair, skin, and nail care; dermatologist-approved insider secrets for managing the condition; and a searchable database to find a dermatologist near you who specializes in psoriasis

For more information, contact the AAD by calling (888) 462-DERM (3376). You can also follow the AAD on: 

Psoriasis Association

Founded in 1968, this United Kingdom–based charity and membership organization’s goal is to help improve the lives of people with psoriasis or other forms of psoriatic disease. Over the years, the Psoriasis Association has donated millions of pounds to fund psoriasis research that aims to understand more about the causes, nature, and care of psoriasis.

The Psoriasis Association hosts an annual Psoriasis Awareness Week, as well as other initiatives and fundraisers to spread knowledge about psoriasis to a wider audience. They also provide educational information directly on their website about psoriatic disease, including how it’s treated and how it can affect your day-to-day.

Notably, the Psoriasis Association invites members of the psoriasis community to share their stories about what life with the condition is really like. They also offer peer-to-peer support through their Facebook group and various forums, as well as an opportunity to connect with others, share experiences, and seek support.

You can reach their helpline by contacting the organization directly:

Inspire’s Psoriasis Community Forum

Inspire is an online community that connects people with psoriasis or psoriatic arthritis (and their loved ones) to healthcare professionals. Think of it as a place where you can share health information, seek advice, and find support.

To participate, visit their Psoriasis Community forum, an online group for people with psoriasis or psoriatic arthritis that has more than 300,000 members. You’ll need to create a free account to log in; afterward, you can read posts and comments and interact with other members.

PsoriaSis Collective

After experiencing a particularly bad psoriasis flare during the COVID-19 pandemic, Ayesha Patrick started searching for information and support from other people of colour. Frustrated with the lack of available resources, she founded the PsoriaSis Collective as a safe space to support women of colour who are living with psoriatic disease.

Patrick shares her personal experiences with the world through her blog and connects directly with others through her Facebook group. She also participates in NPF-hosted fundraising events in New York.

Resources We Trust


Wednesday, 2 August 2023

Understanding the Different Types of Psoriasis

From healthline.com

Psoriasis is a chronic skin disease. It’s considered an immune-mediated disease, which means the immune system acts abnormally. There are different types of psoriasis, and it’s possible to have more than one type.

Psoriasis typically affects the skin, causing skin cells to build up faster than usual. It can also affect other organ systems, especially the joints.

According to a 2021 studyTrusted Source, about 7.5 million U.S. adults 20 years or older have psoriasis — a 3 percent prevalence rate (occurrence of a condition). By race and ethnicity, the prevalence rates are:

  • 3.6 percent of white people
  • 3.1 percent of non-Hispanic, including multiracial, people
  • 2.5 percent of Asian people
  • 1.9 percent of Hispanic, including Mexican American, people
  • 1.5 percent of Black people

Psoriasis causes your skin to develop scaly patches that can be itchy and painful.

Psoriasis tends to be pink or red on people with light or fair skin tones, with silvery-white scale. On medium skin tones, it can appear salmon-coloured with silvery-white scale. On darker skin tones, the psoriasis could look violet, brown, or reddish brown often with light-coloured or greyish-coloured plaques.

There’s limited research and information about managing and diagnosing psoriasis in People of Colour. A 2014 study found the prevalence of psoriasis among adults ages 20 and older to be 3.2 percentTrusted Source, and found the rates vary by race and ethnicity:

  • White: 3.6 percent
  • Black/African American: 1.9 percent
  • Hispanic: 1.6 percent

These numbers may not tell the entire story, as People of Color may be disproportionately undertreated and misdiagnosed. This is because psoriasis isn’t always recognized on darker skin tones as it is for people with lighter skin tones.

Read on to learn more about the different types of psoriasis and how they’re treated.

The most common symptoms of psoriasis include:

The symptoms of psoriasis also vary based on the type. There are eight types of psoriasis:

  • plaque
  • guttate
  • inverse
  • pustular
  • erythrodermic
  • psoriatic
  • nail
  • scalp

Psoriasis can lead to mental stress, anxiety, and low self-esteem. Depression is also common in people who have psoriasis.

Other diseases, such as Crohn’s diseaseceliac diseasemetabolic syndrome, and cardiovascular disease, have been linkedTrusted Source with psoriasis.

There are also subcategories of psoriasis types. These appear differently depending on the location of the body. Psoriasis isn’t contagious regardless of type.

Psoriasis patches on darker skin tones may also be more widespread, which can make it difficult to diagnose.

Generally, psoriasis patches appear more purple or brown on darker skin tones, often with thick silvery plaques.

Plaque psoriasis, or psoriasis vulgaris, is the most common form of psoriasis. An estimated 80% to 90% of people with psoriasis have plaque psoriasis. It’s characterized by thick red or purplish patches of skin, often with a silvery-white or gray scales.

These patches often appear your elbows, knees, lower back, or scalp.

Patches are usually 1 to 10 centimeters wide, but can also be larger and cover more of your body. If you scratch at the scales, the symptoms will often get worse.

Treatments

As a way to ease discomfort, a doctor may recommend applying moisturisers to keep the skin from becoming too dry or irritated. These moisturisers include an over-the-counter (OTC) cortisone cream or an ointment-based moisturiser.

A doctor may also work to identify your unique psoriasis triggers, including stress or lack of sleep.

Other treatments may include:

  • vitamin D creams, such as calcipotriene (Dovonex) and calcitrol (Rocaltrol), to reduce the rate that skin cells grow, in combination with topical steroids to reduce inflammation and itching
  • topical retinoids, like tazarotene (Tazorac, Avage), to help reduce inflammation
  • immunosuppressives, such as methotrexate or cyclosporine
  • applications of coal tar, either by cream, oil, or shampoo
  • biologics, a category of anti-inflammatory drugs

Medication may differ for guttate or erythrodermic psoriasis.

In some cases, you may need light therapy. This involves exposing the skin to both ultraviolet (UV)A and UVB rays. Sometimes, treatments combine prescription oral medications, light therapies, and prescription ointments to reduce inflammation.

With moderate to severe cases, you may be prescribed systemic medication in the form of oral, injectable, or intravenous (IV) medication.

Guttate psoriasis appears in small red spots on the skin. In darker skin tones, these spots can appear violet or brown. It’s the second most common type, affecting around 8% of people with psoriasis. Most of the time, it starts during childhood or young adulthood.

The spots are small, separate, and drop-shaped. They often appear on the torso and limbs, but they can also appear on your face and scalp. Spots are usually not as thick as plaque psoriasis, but they can develop into plaque psoriasis over time.

Guttate psoriasis happens after certain triggers. These triggers include:

Treatments

To treat guttate psoriasis, a doctor may prescribe steroid creams, light therapy, and oral medications. Determining the underlying cause of the infection can also help clear guttate psoriasis. If a bacterial infection caused the condition, antibiotics may help.

Flexural or inverse psoriasis often appears in skinfolds, such as under the breasts or in the armpits or groin area. This type of psoriasis is red or purple and often shiny and smooth.

The sweat and moisture from skinfolds keeps this form of psoriasis from shedding skin scales. Sometimes, it’s misdiagnosed as a fungal or bacterial infection. The skin-on-skin contact can make inverse psoriasis very uncomfortable.

Most people with inverse psoriasis also have a different form of psoriasis in other places on the body.

Treatments

The treatments for inverse psoriasis are like plaque psoriasis treatments. They can include:

  • topical steroid creams
  • nonsteroidal such as phosphodiesterase (PDE)-4 inhibitor
  • light therapy
  • oral medications
  • biologics, which are available via injection or IV infusion

A doctor may prescribe a lower potency steroid cream to avoid your skin from thinning too much. You may also benefit from taking or applying medications that reduce yeast or bacteria growth.

Pustular psoriasis can be severe at times. This form of psoriasis may develop quickly in the form of many white pustules surrounded by red or darkened skin.

Pustular psoriasis may affect isolated areas of your body, like your hands and feet, or cover most of the skin’s surface. These pustules can also join together and form scaling. However, if it affects all areas of the bodyTrusted Source — such as the Von Zumbusch subtype — it can be life threatening because it has severe systemic effects.

Some people experience cyclic periods of pustules and remission. While the pus is noninfectious, this condition can cause flu-like symptoms such as:

There are three kinds of pustular psoriasis:

Each of the three forms of pustular psoriasis can have different symptoms and severity.

Treatments

Treatment may include OTC or prescription corticosteroid creams, oral medications, or light therapy. Biologics may also be recommended.

Identifying and treating the underlying cause may also help reduce reoccurrence of pustular psoriasis.

Erythrodermic psoriasis, or exfoliative psoriasis, is a rare type of psoriasis that looks bright red or dark purplish in people with darker skin tones along with shedding of the skin. The condition is serious and is a medical emergency. You may need to be hospitalized, as your body may not be able to manage your body temperature.

This form of psoriasis is widespread, with red or purple skin and silvery scales. It may cover large portions of your body. Exfoliation often occurs in larger pieces than the small scales typical to most psoriasis.

Erythrodermic psoriasis can develop from:

  • pustular psoriasis
  • widespread, poorly controlled plaque psoriasis
  • a bad sunburn
  • infection
  • alcohol use disorder
  • significant stress
  • abrupt discontinuation of a systemic psoriasis medication
  • using oral steroids, cyclosporin, or methotrexate

Treatments

This condition often needs attention at a hospital. There, you’ll receive a combination of therapies.

This can include an application of medicated wet dressings, topical steroid applications, biologics, or prescription oral medications until symptoms have improved.

Make an appointment with a doctor if you think you have erythrodermic psoriasis.

Psoriatic arthritis (PsA) is a painful and physically limiting condition that affects between 30% and 33% of people with psoriasis. There are five types of PsA with varying symptoms. There’s also no cure for this condition.

Psoriasis is an autoimmune disease, so it can trigger your body to attack your joints and skin. It can affect many joints and often becomes quite severe in the hands and affect the nails. Skin symptoms usually appear before joint symptoms.

Treatments

Treatments for psoriatic arthritis can include nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil) and naproxen sodium (Aleve). NSAIDs can help reduce the incidences of swelling and pain associated with psoriatic arthritis.

Prescription medications, such as an oral corticosteroid, may also help reduce inflammation that leads to psoriatic arthritis. Prescription topical medications used to treat psoriatic arthritis include salicylic acid, calciopotriene, and tazarotene.

A unique category of medications known as disease-modifying antirheumatic drugs (DMARDs) can help reduce inflammation and joint damage. Biologics, which are a subcategory of DMARDs, may be prescribed to reduce inflammation at a cellular level.

Although not an official type of psoriasis, nail psoriasis is a manifestation of psoriasis. The condition can often be confused with fungal infections and other infections of the nail.

Nail psoriasis can cause:

  • nail pitting
  • grooves
  • discoloration
  • loosening or crumbling of your nail
  • thickened skin under your nail
  • colored patches or spots under your nail

Sometimes, the nail can even crumble and fall off. There’s no cure for psoriatic nails, but some treatments may improve the health and appearance of nails.

Treatments

Treatments for nail psoriasis are like the ones used for plaque psoriasis. It may take time to see the effects of these treatments as nails grow very slowly. Treatment options include:

  • light therapy
  • oral medications, such as methotrexate
  • biologics

Scalp psoriasis is common in people with plaque psoriasis. For some people, it may cause severe dandruff. For others, it can be painful, itchy, and very noticeable at the hairline. Scalp psoriasis can extend to your neck, face, and ears in one large patch or many smaller patches.

In some cases, scalp psoriasis can complicate regular hair hygiene. Excessive scratching can cause hair loss and scalp infections. The condition may also cause feelings of social stress.

Treatments

Topical treatments are most commonly used for scalp psoriasis. They may require an initial 2 months of intensive applications, plus permanent, regular maintenance. Treatment options include:

  • medicated shampoos
  • tar preparations
  • topical application of vitamin D, known as calcipotriene (Dovonex)

Light therapy, oral medications, and biologics also may be recommended depending on the responsiveness to treatment.

There’s no one cure for any form of psoriasis, but remission and significant healing is possible. Your doctor will work with you to create a treatment plan that helps manage your condition. You can also take steps at home to manage psoriasis.

These can include:

  • practicing relaxation techniques to reduce stress
  • moisturising dry skin
  • quitting smoking
  • avoiding products that irritate your skin
  • wearing comfortable clothing that doesn’t rub the psoriasis
  • eating a healthy diet

Doctors may slowly build up to the most effective treatment plan for your psoriasis symptoms. Most start with a topical or light therapy treatment and only progress to systemic medications if the first line of treatment is unsuccessful.

Stress, anxiety, depression, and other mental health conditions can be commonly found in people with psoriasis. You may benefit from therapy or support groups where you can meet other people experiencing similar issues or concerns.

You can also talk with a healthcare professional about seeing a therapist who has experience with psoriasis. They’ll be able to help identify ways to cope.

Visit the National Psoriasis Foundation for the latest information on research, events, and programs.

There are different types of psoriasis that present different symptoms. While there’s no cure for psoriasis, treatment can help relieve and manage your symptoms. Talk with a doctor if you’re concerned about your skin.

The type of psoriasis you have, and its severity, will determine your treatment. Generally speaking, milder cases with smaller psoriasis patches can often be treated topically. More serious cases, with larger patches, may require systemic treatment.

Many people believe that psoriasis is contagious, but it won’t spread from person to person. Researchers believe that a combination of genetics and environmental and immune system factors cause psoriasis.

Thanks to the advocacy work of dozens of psoriasis activists and organizations, psoriasis is also gaining more support and awareness. Talk with a doctor if you believe you have psoriasis. They’ll be able to provide treatment options and coping methods.

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