Scleroderma Research Foundation’s Post

The update is BE FAST- Balance issues and eye blurry or double vision

When you look at me, can you tell I have an invisible illness? The answer is probably no. And that’s the challenge many of us face daily. Living with an invisible illness like Lupus means that while I might appear healthy on the outside, my reality is a constant battle. Some days, I feel almost normal. But out of nowhere, I can be knocked down again, struggling with symptoms that impact every aspect of my life. This journey hasn't been easy. I’m 36, and I’ve already had shoulder surgery due to this illness. I’m on blood pressure and heart medication, along with anti-inflammatory, disease-modifying drugs, and low-dose chemotherapy – treatments that I will need for the rest of my life. There are good days and bad days, and the unpredictability of flares can be frustrating and scary. Flares can manifest in various ways: severe stiffness and swelling, liver and kidney issues, joint pain akin to intense migraines, or brain fog that makes forming sentences a challenge. Yet, there are also moments where I feel so good that I forget I’m sick, which sometimes leads me to overexert myself and trigger another flare. Since my diagnosis in 2020, after years of health struggles, it's been an uphill battle. Over the past year, I’ve also faced lupus-induced alopecia. Losing hair has been particularly hard for me. While I’m used to dealing with pain, my hair has always been my safety blanket, and watching it thin out has been emotionally taxing. Sharing this isn’t easy, but I believe in the importance of being authentic. We never truly know what battles our coworkers are fighting behind the scenes. If my story can help even one person feel less alone, then it's worth it. For more about Lupus and how it impacts lives, here’s an overview that explains it better than I ever could: https://lnkd.in/ggpPCEXH

I recently met a friend who shared that she lost a brother to #lupus in January of this year. He was only 33yrs old. Today, #WorldLupusDay, is an opportunity to recognize the impact of this very rare disease that is often missed or misdiagnosed. Lupus is often thought of as a female health condition, however, about 10% of all people diagnosed with lupus are male. Some call it the cruel mystery, because Lupus can attack many different parts of the body. It is a chronic, autoimmune disease that affects more women than men, leading to an increased risk for other health problems that are common in women, such as heart disease and osteoporosis. It is not known why lupus is more common among females or why symptoms in males are typically more severe. Symptoms can include: 1. A butterfly-shaped rash on your face that stretches across the nose and cheeks, in a shape resembling a butterfly. 2. A fever that just won’t go away can be a sign of inflammation, and some patients may be feverish during a lupus flare-up. 3. Rashes or sores appear on your skin after going outside due to photosensitivity, meaning their skin is very sensitive to ultraviolet light. 4. Sore and stiff joints are part of your everyday life, often mimiking rheumatoid arthritis (RA) because both diseases can cause joint pain and stiffness, often in the hands, wrists, and ankles. 5. Swelling, swollen lymph nodes and puffiness around your eyes can also be signs of lupus. 6. Hair loss, which can be patchy, leaving little bald spots or cause thinning all over the scalp. 7. One third of people with lupus experience Raynaud’s, a syndrome that affects the blood vessels and blood supply and causes your skin to narrow, limiting blood circulation, especially when you’re cold or under stress. Commonly, you have Raynaud’s if your fingers or toes (or both) go numb and turn blue or white. 8. Profound fatigue is a common complaint of people with lupus and while it isn’t specific to lupus it may provide another clue, if someone has other lupus symptoms. 9. Chest pain, where it hurts to cough or breathe deeply, could be pleurisy—inflammation of the lining of the lungs, which is a common symptom of lupus. 10. Mouth sores or ulcers, like canker sores, on the roof of the mouth or tongue or even the nose, can last a few days to a month or more, according to the American College of Rheumatology. 11. Lupus can attack platelets and blood cells that help form clots to stop bleeding. People notice little red blood spots on their legs because their blood vessels are leaking blood causing nosebleeds or be bleeding from the gums when they brush their teeth. 12. Lupus can attack the brain and nervous system, up to 50% reporting memory, concentration, and other cognitive issues dubbed “lupus fog,” And when lupus attacks the nerves, it can cause numbness or tingling and numbness in fingers and toes. If you or a loved one have symptoms... see a healthcare provider soon.

What are your chances of having varicose veins?  Recently, Dr. John Hogg, CEO/Founder of Medical Vein Clinic™ spoke to KSAT News: "If one parent has varicose veins, you have a 50% chance of getting them. If both parents have them, your chance of getting them is at 90%. Start early, check your legs. You see Mom and Dad, start thinking about what I can do to prevent it,” Dr. Hogg said. Other risk factors include your profession, height and your location. When it comes to your profession, if you sit a lot and don’t move your legs much, this can affect your veins and lymphatic system. “You need to keep your toes on the ground and pick your heels up and move them back and forth, I call that chair walking,” said Dr. Hogg. Your height plays a role because the taller you are the more likely you can get diseases in your veins since your blood has to travel more. Heat plays a role in your veins because the hotter it is outside, the more your veins are able to expand. Thankfully, treatments for vein and lymphatic diseases are usually non-surgical.  Without treatment, vein disease will progress and limit your health and activity. Medical Vein Clinic offers  minimally-invasive outpatient treatments---covered by insurance---that will have you enjoying life again. https://lnkd.in/gtFwTdwU.   #leghealth #edema #bloodclots #dvt #deepveinthrombosis #bloodclot #lipedema #lymphedema #varicoseveins #veinhealth #legswelling

WHAT I WISH THE WORLD KNOWS ABOUT SCD Sickle cell disease pain, to me is unexplainable because no matter how much you try to explain what it feels like to people,they can never understand it, like someone who actually experiences it.Some, have even likened it to childbirth pains but believe me, they are not the same. There's nothing compared to that sharp persistent throbbing pains that seems to last forever. Always feeling like someone is taking a sledgehammer to your bones and the memories it leaves behind ,whew.....! is constantly ingrained in your brains. One of the biggest problems we face as someone living with sickle cell,is how we are always being misunderstood.People tend to always believe that most times, our pains are exaggerated and we do so, just to get attention. it is always very disheartening, when you notice people have such notions about you. Receiving superficial support from others when dealing with a lifelong disease can be very devastating. I wish people took into consideration how naturally stressful life can be, for someone with sickle cell and how offering views on how they should live is never helpful. Putting an expiry date on someone's life is one the worst things that can ever happen to a human being and that is what is constantly happening to every sickle cell patient. Everybody has an opinion on how long you will live, forgetting the most crucial fact;they are not your creator. Even professional care givers label your mortality rate based on their day to day experience. I believe the job falls to those of us with sickle cell disease, to let the world 🌍 know,that it is outrightly wrong to put an expiration date on a person's life,no matter what the health circumstances may be. By speculating how long a person lives, you are already limiting his or her potentials because you have already created a mental picture for the person, that he or she won't last so why bother to achieve anything? Just live each day as it comes. That way,he or she is already believing death may come at anytime.Only the strong ones dispute that notion and get to prove to the world that,they are made for greater purposes in life. The world needs to show more encouragement, motivation and let people with sickle cell disease around them, know that,there is nothing they cannot achieve if they set their minds to it. They would even beat the greatest odds in life. To be continued...

Addison's Disease: Addison's disease, also called adrenal insufficiency, is an uncommon disorder that occurs when the body doesn't make enough of  adrenal hormones. In Addison's disease, the adrenal glands which are located above the kidneys, produce too little cortisol and often, too little aldosterone. This disease could be life-threatening and treatment involves the replacement of hormones that are missing. This disease's symptoms develop slowly, over time, and processes slowly. So slow that symptoms are ignored until stress such as illness or injury occurs and makes symptoms worse. Symptoms include extreme fatigue, loss of appetite and weight, hyperpigmentation, hypotension, syncope, nausea, vomiting, diarrhea, salt craving, abdominal pain, myalgia, arthralgia, sexual dysfunction, depression, irritability, body hair loss. Sometimes Addison's disease appears suddenly(called Addisonian crisis) can lead to life-threatening shock. Causes include autoimmune destruction, infection, bleeding, cancer of adrenal glands, Secondary causes include pituitary tumor or surgery, stopping corticosteroids abruptly during treatment. If Addison's disease is left untreated, then the quality of life is affected because of fatigue, weakness, dehydration, low blood pressure, abdominal pain, ultimately shock, and death in the Addisonian crisis. During the initial stages of Addison's disease, the quality of life is as a normal person. As time progresses and is not treated properly, Addison's disease patients have a poor quality of life. Females have a significant impact on quality of life than males. With proper medication and expert opinions can live a normal life.

In the Sharecare article titled, "Your Thyroid: What You Need to Know", Endocrinologist Jack Merendino says, "Autoimmunity is a major category of disease, and thyroid disease is the most common autoimmune disease...Autoimmune thyroid disease is overwhelmingly more common in women, by four- or fivefold."   To learn more about #thyroid disorders click the link below. https://lnkd.in/ghY8Qy4p   #ThyroidAwareness #thyroiddisorders #pharmamarketing #SharecareZeroPartyData #Alltgetherbetter

In the Sharecare article titled, "Your Thyroid: What You Need to Know", Endocrinologist Jack Merendino says, "Autoimmunity is a major category of disease, and thyroid disease is the most common autoimmune disease...Autoimmune thyroid disease is overwhelmingly more common in women, by four- or fivefold."   To learn more about #thyroid disorders click the link below. https://lnkd.in/edB2sQPx #thyroidawareness #thyroiddisorders #pharmamarketing #SharecareZeroPartyData #Alltogetherbetter

Juvenile arthritis is a disease that cause inflammation and affect children and teens under 16. The most common type, called juvenile idiopathic arthritis (JIA), causes ongoing pain, swelling, and stiffness in the joints. Some types of JIA can also lead to serious issues like problems with growth, damage to the joints, and eye inflammation if not treated. In this article, we’ll help you understand juvenile arthritis symptoms and management strategies. READ ARTICLE: https://lnkd.in/d4RJjCZ2