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Scleroderma Directory
What Is Artificial Skin?Experts continue to work on artificial skin options that can protect and detect things just like human skin. Learn more here.
What to Know About Different Types of TicksSeveral types of ticks exist in the U.S. Ticks are tiny arachnids that can cause diseases. Learn more about the types of ticks and the diseases they carry.
What to Know About Smiley PiercingsFind out what you need to know about smiley piercing placement, jewelry, risks, and more.
Elastin: What to KnowFind out what you need to know about elastin. Discover the pros, cons, risks, benefits, and how it may affect your health.
What Is FUPA?Learn about FUPA and problems related to fatty upper pubic areas. Discover the symptoms and the best treatments for these weight-related issues.
What Are Treatments for Keloid Scars?Keloid scars are thick irregular-looking scars. Learn about treatments that might improve the appearance of keloid scars.
Prurigo NodularisIt's a rare but dramatic skin problem with a relentless itch and hard lumps all over your body. Learn about prurigo nodularis and how to get relief.
Familial Cold Autoinflammatory Syndrome (FCAS)FCAS is a rare genetic disorder. It affects how your body controls inflammation. Symptoms are triggered by exposure to the cold, though experts aren't sure why. It's the mildest type of cryopyrin-associated periodic syndrome (CAPS).
Integumentary System: What to KnowFind out what you need to know about the integumentary system and discover how it may affect your health.
Epithelium: What to KnowFind out what you need to know about the epithelium, including where epithelial cells are located in your body and how they affect your health.
What Is Perichondritis?Have you been diagnosed with perichondritis? Read our guide to learn more about this ear infection and how to treat it.
What Is Calciphylaxis?Calciphylaxis occurs when calcium builds up in your blood vessels. Learn more about what causes it, symptoms of calciphylaxis, and more.
What to Know About Cellulitis From an Insect BiteWhat causes cellulitis from an insect bite? Learn what you need to know to protect yourself.
What to Know About a Chlorine Rash?Some people get a rash after swimming in chlorinated pools or hot tubs. Read on to learn more about the symptoms, causes, and how to prevent chlorine rash.
What Is a Viral Exanthem Rash?Discover what a viral exanthem rash is. Learn how it's caused, the symptoms, and how to treat it.
How to Use Epsom Salt on an Ingrown ToenailFind out how to use epsom salt on an ingrown toenail.
Chronic Spontaneous Urticaria: Low-Histamine DietCould a low-histamine diet clear up chronic spontaneous urticaria, or hives? Find out which foods and drinks are higher in histamines and what to eat instead.
What to Know About Bath Bombs and Your SkinBath bombs are a great way to amplify your bathtime experience but can irritate the skin. Discover how they can be used safely and avoid contracting a rash after bathing.
What Is Myiasis?Learn how to manage myiasis, a parasitic infection spread by fly larvae.
What Is Cold Urticaria?Learn what cold urticaria is, including what causes cold urticaria, cold urticaria symptoms, cold urticaria treatment, and more.
The UV Index ExplainedThis tool can tell you how strong UV rays are in your area and help you protect your skin. Learn more about how it works.
What Is Aquagenic Urticaria?Learn what aquagenic urticaria is, as well as its causes, symptoms, treatment options, and more.
How to Choose a Lice CombDiscover how to choose and use a lice comb. Learn if electric, plastic, or metal combs are the best at getting rid of lice.
What to Know about Paper CutsWhat is a paper cut, and why does it hurt so much? Find out how you get a paper cut and how you should treat it.
What to Know About Cercarial Dermatitis (Swimmer's Itch)Learn about the parasite that causes swimmer's itch.
What Is Solar Urticaria?Learn about solar urticaria, a rare allergy to sun exposure.
What to Know About Oak Leaf Itch MitesLearn more about the oak mite, what it looks like, and how to prevent their itchy bites.
What to Know About SweatingFind out what you need to know about normal sweating causes, what is in sweat, and if you can sweat out toxins.
What to Know About Chinch BugsChinch bugs are pests living in our lawns and parks. Learn more about these bugs, including their appearance, life cycle, how to treat them, and if they're dangerous to humans.
What Is an Arboviral Disease?Arboviral diseases are transmitted to humans by insects like mosquitoes and ticks. Learn about the symptoms, treatments, and how to keep yourself safe.
What Is Yellow Nail Syndrome?Yellow nail syndrome is a rare disorder that affects your fingernails and toenails. Learn about the causes, symptoms, and treatment options for this condition today.
What Is a Full-Thickness Skin Graft?Learn about full-thickness grafts, when they're used, and when they're needed.
What to Know About ScurvyLearn about scurvy, including its causes, symptoms, how it's treated, and how it can be prevented.
What to Know About Peeling Skin (Desquamation)Peeling skin (desquamation) occurs when the top layer of your skin peels to replace itself. Learn more about what causes it, associated symptoms, and more.
What to Know About Candidiasis TestsFind out what you need to know about candidiasis tests and discover how invasive candidiasis is diagnosed and treated.
What Is Eosinophilic Granuloma?Eosinophilic granuloma is a type of benign bone lesion. Learn about the causes, symptoms, and treatment options for this condition.
What to Know About PoliosisFind out what you need to know about poliosis, including causes and treatments.
What Is Chondrodermatitis?Learn what chondrodermatitis is, how it's treated, and how you can prevent it.
What Is the Head Lice Life Cycle?Head lice are insects that live on human heads. Learn more about their life cycle, from nits to adults.
What to Know About Cysts at the Base of the SpineWhat are Tarlov cysts? Learn about these cysts that can develop on your spine.
What to Know About Periungual WartsWhat to know about periungual and subungual warts. How do you get them, and what are the treatments available for them.
What Is Gianotti-Crosti Syndrome?Learn what a Gianotti-Crosti syndrome is and what to do if your child gets it.
What Is Erysipelas?Learn what erysipelas is and how it is caused. Can it cause complications, or is it easily curable? Find out here.
What is Post Inflammatory Hyperpigmentation?Learn about post-inflammatory hyperpigmentation, who is at risk, and how it is treated and managed.
What to Know About Black Flies (Buffalo Gnats)Black flies appear in early summer and late spring, appearing dark in appearance. Learn whether they make you sick and how to protect yourself from them.
What Is an Angiokeratoma?An angiokeratoma is a type of small skin lesion that forms on your body. Learn more about what causes it, what to expect, and more.
What Is Cutis Laxa?Cutis laxa is a group of disorders that affect your connective tissue. Learn about the causes, symptoms, and treatment options for this condition today.
What to Know About Benign Lichenoid KeratosisBenign lichenoid keratosis is a skin condition that causes a rash or sores. Learn about its symptoms, diagnosis, treatment options, and risks today.
What's a 'Murder Hornet'?"Murder hornet" is a misleading nickname for the world's largest species of hornet, the Asian giant hornet. As the name suggests, they originate in Asia. But they've since been found in Washington State. Scientists first confirmed their presence near Blaine, WA, in December 2019.
I Was Diagnosed With Scleroderma And Was Given 5 Years To Live. I Am Celebrating With Lavish Birthday Parties 17 Years Later.
I was diagnosed with scleroderma and was given 5 years to live. I am celebrating with lavish birthday parties 17 years later.
nullCourtesy of Kheesa J
Kheesa J was diagnosed with scleroderma, a rare autoimmune disease.
Her daughter was an infant, and doctors told her she had five years to live.
Seventeen years later, she's stable and has another daughter.
This as-told-to essay is based on a conversation with Kheesa J. It has been edited for length and clarity. Her full name is known by Insider, but we are referring to her by her first name and last name initial to preserve her daughter's identity.
In 2005, I was going through a divorce and moving out on my own. When my body became swollen and achy, I thought I had moved too much furniture. Then, I noticed more symptoms. I worked on the third floor and normally jogged up the stairs because I was always running late. Suddenly, I couldn't make it to the second floor, and before long, I was taking the elevator.
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But the last straw came on my birthday. I bought beautiful green, gold, and blue shoes to match my outfit. They fit perfectly in the store, but at home, they were too small.
I made a doctor's appointment after that, but they sent me home. I was told I had depression or maybe ate too much salt. It took about five appointments and requesting a new physician before anyone took me seriously. At that appointment, I literally threw my hands in the air because I was so frustrated. The doctor noticed my hands were purple, and she sent me to see a rheumatologist.
I was diagnosed with a rare autoimmune disorderThe specialist didn't know exactly what was going on, but he started me on some medications and told me not to get pregnant while on them. Sure enough, six weeks later, I found out I was expecting. The pregnancy was tough, and I had to deliver my daughter a month early.
When I was giving birth, the nurses tried repeatedly to give me an IV. I felt like a pin cushion and finally spoke up, demanding a new nurse. That nurse came in and looked at me like my grandma — she had something important to say, and she was going to make sure I was paying attention. "Tell your doctor that I said you have thick skin," she said.
I never saw her again, but I took her words back to my rheumatologist. Using her tip, he diagnosed me with scleroderma, a rare autoimmune condition that causes the skin and other organs to thicken. Because of scar tissue in my lungs, I also had sclerosis-associated interstitial lung disease (ILD), a condition that makes it hard to breathe. At first, my doctor was happy to have an answer, but then his face got serious: he told me there was basically no treatment, and I was going to die.
I vowed to change my outlook after getting chemo on my birthdayI fired that doctor and found another specialist I still see today. She had a better bedside manner but the same grim news: I had about five years to live. My daughter was only an infant, so hearing that was terrifying.
A year later, I was getting chemotherapy treatments to help with my symptoms. The nurse looked at my birth date and noticed it was my birthday. She said, "I'm so sorry you're here."
But in that moment, she shifted my mindset. I wasn't feeling bad for myself. To be getting treatment meant I was still alive. I decided that I was going to live every second that I could, and I was never going to have another boring birthday in the hospital again.
I started planning lavish partiesThat's when I started planning lavish birthday parties. When I turned 30, I flew my friends out to Vegas. Another year, we rented a party bus and went to play laser tag drunk. One party was the kids' party of my childhood dreams — and just as much fun for adults.
At the same time, I realized I needed to make special memories with my daughter. There was a real chance I would die, and she'd only have memories of me. I wanted them to be extraordinary ones.
We spent the night in zoos and in a wax museum. We started a tradition of making intricate costumes for Chick-fil-A's Cow Appreciation Day. We traveled the country and have seen almost all the national monuments.
Today, my oldest is nearly an adultToday, my oldest daughter is almost 18. Her birth literally saved my life by getting me a diagnosis, thanks to the nurse. Then, her existence saved me. I had no choice but to fight to be here with her, even in the face of a terminal prognosis.
Her sister is 5. I'm still living with scleroderma, but I've realized there's life after diagnosis. Truly, I feel like my autoimmune disease is the best thing that's ever happened to me. It wasn't until I faced the possibility of dying that I really started living.
I've learned a lot about managing a chronic condition. For example, if doctors don't take me seriously, I say, "Please make a note in my chart that I asked you about this, and you brushed me off." Suddenly, they're more apt to listen.
More importantly, I've learned to appreciate every day. Tomorrow is never promised to anyone, so we need to all take advantage of today.
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Kyverna Therapeutics Announces FDA Clearance Of IND For KYV-101, A Novel Fully Human CD19 CAR T-Cell Therapy To Treat Scleroderma
Kyverna Therapeutics Announces FDA Clearance of IND for KYV-101, a Novel Fully Human CD19 CAR T-Cell Therapy to Treat SclerodermaPR Newswire
EMERYVILLE, Calif., Oct. 11, 2023
The investigational therapy will be used in Kyverna's KYSA-5 Phase 1/2 open-label, multicenter study to evaluate KYV-101 in adult patients with diffuse cutaneous systemic sclerosis (scleroderma)
This is the third IND clearance for KYV-101, a novel, fully human CD19 CAR T-cell therapy designed for use in patients with B cell-driven autoimmune diseases
EMERYVILLE, Calif., Oct. 11, 2023 /PRNewswire/ -- Kyverna Therapeutics ("Kyverna"), a clinical-stage cell therapy company with the mission of engineering a new class of therapies for serious autoimmune diseases, today announced the clearance of the third Investigational New Drug (IND) application for KYV-101 by the U.S. Food and Drug Administration (FDA). This will allow Kyverna to initiate a Phase 1/2 open-label, multicenter study of KYV-101, an Autologous Fully Human Anti-CD19 Chimeric Antigen Receptor (CAR) T cell therapy for the treatment of diffuse cutaneous systemic sclerosis (scleroderma).
The trial, named KYSA-5, adds to the ongoing Phase 1 KYSA-1 trial in the U.S. And the Phase 1/2 KYSA-3 trial in Germany where KYV-101 is currently investigated in adults with active lupus nephritis.
"We welcome Kyverna's enthusiasm and interest to push forward with their CAR T approach in scleroderma patients with the KYSA-5 trial," said Luke Evnin, chairman of the Scleroderma Research Foundation. "We await the results with optimism that CAR-T driven B cell ablation may ultimately deliver efficacy with adequate safety for a broader range of our patients than immune-ablative chemotherapy alone."
"We are immensely proud of being able to bring KYV-101 to patients suffering from scleroderma," said Peter Maag, Ph.D., chief executive officer of Kyverna Therapeutics. "We are keen to initiate our KYSA-5 trial in this new patient population and generate data to support our KYV-101 design goals. With the deep B cell depletion from KYV-101 treatment, patients with scleroderma may have a full reset of their immune system to stop the vicious cycle of their overactive immune system."
About KYV-101 KYV-101 is an autologous version of a novel, fully human clinical-stage anti-CD19 chimeric antigen receptor (CAR) T cell construct with properties well suited for use in B cell-driven autoimmune diseases such as lupus nephritis, scleroderma, and other B cell-driven autoimmune diseases. In a 20-patient Phase 1/2 study in oncology, expected anti-lymphoma activity was associated with a significant reduction of cytokines released that translated into a strong reduction of cytokine-driven side effects such as the rate of immune effector cell-associated neurotoxicity syndrome (ICANS).1 The fully human anti-CD19 CAR also translated into reduced immunogenicity that favorably impacted cell persistence at one month. Kyverna recognized that these properties singled out KYV-101 as a product ideally poised for use in patients with autoimmune diseases, and the company obtained exclusive, worldwide licenses from the National Institutes of Health (NIH) to use this CD19 construct in both autologous and allogeneic CAR T-cell therapies.
About Systemic SclerosisSystemic sclerosis (scleroderma) is a rare, chronic autoimmune disorder that affects the skin and internal organs and can have life-threatening complications.2,3 Severe scleroderma is associated with widespread pain, discomfort, and stiffness due to skin and joint involvement. Organ involvement may include interstitial lung disease, pulmonary hypertension, heart complications, kidney dysfunction, and gastrointestinal issues and may significantly reduce life expectancy. Managing severe scleroderma is complex and often requires a combination of medications, including immunosuppressants and disease-modifying drugs, as well as specialized care.
About Kyverna Therapeutics Kyverna Therapeutics is a clinical-stage cell therapy company with the mission of engineering a new class of therapies for autoimmune and inflammatory diseases. The Kyverna therapeutic platform combines advanced T-cell engineering and synthetic biology technologies to suppress and eliminate the autoreactive immune cells at the origin of autoimmune and inflammatory diseases. Kyverna's pipeline includes next-generation chimeric antigen receptor (CAR) T-cell therapies in both autologous and allogeneic formats with properties well suited for use in B cell-driven autoimmune diseases. By offering more than one mechanism for taming autoimmunity, Kyverna is positioned to act on its mission of transforming how autoimmune diseases are treated. For more information, please visit .
Kyverna Media Contact:Christian Pflaumer +1 (917) 841-4525christian.Pflaumer@ruderfinn.Com
References: 1. Brudno et al., Nature Medicine 2020; 26:270-280. 2. Bergamasco et al., Clin Epidemiol 2019; 11:257-273 3. Adigun et al. Systemic Sclerosis. [Updated 2022 May 8]. https://www.Ncbi.Nlm.Nih.Gov/books/NBK430875/
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SOURCE Kyverna Therapeutics
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