QUOTE FOR WEDNESDAY:

“Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may change over time and overlap with those of many other disorders.

No one test can diagnose lupus.

Treatment for lupus depends on your signs and symptoms. Determining whether you should be treated and what medications to use requires a careful discussion of the benefits and risks with your doctor.

As your signs and symptoms flare and subside, you and your doctor may find that you’ll need to change medications or dosages.

What you can do is before your appointment, you may want to write a list of answers to the following questions:

  • When did your symptoms begin? Do they come and go?
  • Does anything seem to trigger your symptoms?
  • Have your parents or siblings had lupus or other autoimmune disorders?”

MAYO CLINIC (https://www.mayoclinic.org/diseases-conditions/lupus/diagnosis-treatment/drc-20365790)

Part II Lupus Awareness–on how it’s diagnosed, what’s the treatments & possible complications.

Diagnosing Lupus:

Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may vary over time and overlap with those of many other disorders. No one test can diagnose lupus. The combination of blood and urine tests, signs and symptoms, and physical examination findings leads to the diagnosis.  Tests the MD will order:

Laboratory tests

Blood and urine tests may include:

  • Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
  • Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn’t specific for any one disease. It may be elevated if you have lupus, another inflammatory condition, cancer or an infection.
  • Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
  • Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
  • Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies — produced by your immune system — indicates a stimulated immune system. While most people with lupus have a positive ANA test, most people with a positive ANA do not have lupus. If you test positive for ANA, your doctor may advise more-specific antibody testing.If your doctor suspects that lupus is affecting your lungs or heart, he or she may suggest:
  • Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs.

  • Ultrasound maybe used in where a M.D. orders a Echocardiogram. It’s a a noninvasive ultrasound test that evaluates heart function.This test uses sound waves to produce real-time images of your beating heart. It can check for problems with your valves and other portions of your heart.Lupus can harm your kidneys in many different ways, and treatments can vary, depending on the type of damage that occurs. In some cases, it’s necessary to test a small sample of kidney tissue to determine what the best treatment might be. The sample can be obtained with a needle or through a small incision.
  • First see a specialist for Lupus who is more out in knowing what to look for (just like a cardiologist for cardiac problems or endocrinologist for diabetes, etc…) So set up an appointment with a doctor to be examined!

Treatments for Lupus:

1. Biopsy

2. The M. D. will do a physical and determine whether your signs and symptoms your experiencing.  Treatment for lupus depends on your signs and symptoms and the cause for it so treatment varies. The symptoms should be treated as lupus and what medications to use requires a careful discussion of the benefits and risks with your doctor. As your signs and symptoms flare and subside, you and your doctor may find that you’ll need to change medications or dosages.

3.Medications, this could include the following:

a. Nonsteroidal anti-inflammatory drugs (NSAIDs).  This could include, over-the-counter NSAIDs, such as naproxen sodium (Aleve) and ibuprofen (Advil, Motrin IB, others), may be used to treat pain, swelling and fever associated with lupus. Stronger NSAIDs are available by prescription. Side effects of NSAIDs include stomach bleeding, kidney problems and an increased risk of heart problems.

b. Antimalarial drugs.  Medications commonly used to treat malaria, such as hydroxychloroquine (Plaquenil), also can help control lupus. Side effects can include stomach upset and, very rarely, damage to the retina of the eye.

c. Corticosteroids  This could include Prednisone and other types of corticosteroids can counter the inflammation of lupus but often produce long-term side effects — including weight gain, easy bruising, thinning bones (osteoporosis), high blood pressure, diabetes and increased risk of infection. The risk of side effects increases with higher doses and longer term therapy.

d. Immunosuppressants.  These drugs suppress the immune system which may be helpful in serious cases of lupus. Examples include azathioprine (Imuran, Azasan), mycophenolate (CellCept), leflunomide (Arava) and methotrexate (Trexall). Potential side effects may include an increased risk of infection, liver damage, decreased fertility and an increased risk of cancer. A newer medication, belimumab (Benlysta), also reduces lupus symptoms in some people. Side effects include nausea, diarrhea and fever.Take steps to care for your body if you have lupus. Simple measures can help you prevent lupus flares and, should they occur, better cope with the signs and symptoms you experience.

4. Other treatments could include:

  • See your doctor regularly. Having regular checkups instead of only seeing your doctor when your symptoms worsen may help your doctor prevent flare-ups, and can be useful in addressing routine health concerns, such as stress, diet and exercise that can be helpful in preventing lupus complications.
  • Get adequate rest. People with lupus often experience persistent fatigue that’s different from normal tiredness and that isn’t necessarily relieved by rest. For that reason, it can be hard to judge when you need to slow down. Get plenty of sleep at night and naps or breaks during the day as needed.
  • Be sun smart. Because ultraviolet light can trigger a flare, wear protective clothing — such as a hat, long-sleeved shirt and long pants — and use sunscreens with a sun protection factor (SPF) of at least 55 every time you go outside.
  • Get regular exercise. Exercise can help you recover from a flare, reduce your risk of heart attack, help fight depression and promote general well-being.
  • Don’t smoke. Smoking increases your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
  • Eat a healthy diet. A healthy diet emphasizes fruits, vegetables and whole grains. Sometimes you may have dietary restrictions, especially if you have high blood pressure, kidney damage or gastrointestinal problems.

Possible complications to Lupus:

  • Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and leg swelling (edema).
  • Brain and central nervous system. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, hallucinations, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts.
  • Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
  • Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy), which can make breathing painful. You may also be more susceptible to pneumonia.
  • Heart. Lupus can cause inflammation of your heart muscle, your arteries or heart membrane (pericarditis). The risk of cardiovascular disease and heart attacks increases greatly.  Other areas of the body that can be effected by lupus causing problems include:  Infection, Cancer, Bone Tissue Death (avascular necrosis), and Pregnancy complications.

 

 

 

 

QUOTE FOR TUESDAY:

“Lupus is an unpredictable and misunderstood autoimmune disease. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus has a range of symptoms, and strikes without warning.

Lupus is a complicated disease that affects different people in different ways. For some, lupus can be mild — for others, it can be life threatening.

Right now, there’s no cure for lupus. The good news is that with the support of your doctors and loved ones, you can learn to manage it.

Lupus is a chronic (long-term) disease that can cause pain and inflammation in any part of the body.

Around 1.5 million people in the United States are living with lupus.

Lupus can cause a lot of different symptoms that come and go over time.

Living with lupus can be hard, but there’s a lot you can do to manage your symptoms and make your daily life easier.”

Lupus Foundation of America (https://www.lupus.org/understanding-lupus)

Part I Lupus Awareness Month-What it is, the 4 major types, & the signs and symptoms!

Lupus Part1a Butterfly Rash

lupus part 1b

 

Lupus is an inflammatory disease that is caused when the auto, meaning “self”, immune system attacks its own tissues.

Lupus is a chronic, an autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Your autoimmune immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues and creates auto-antibodies that attack and destroy healthy tissue. These auto-antibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of remissions (flare ups) whereby the symptoms worsen and you feel ill and remissions (the symptoms improve and you feel better) but the disease remains. So your goal is to keep the disease as best as possible in remissions.

FACTS TO KNOW IF YOU HAVE LUPUS:

  • Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above. However, some treatments for lupus may include immunosuppressant drugs that are also used in chemotherapy.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome) except that they both affect the immune system (but differently) in having remissions and exacerbations, that’s it. In HIV or AIDS the immune system is underactive; whereas in lupus, the immune system is overactive.
  • Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • Another factor in helping you reach remission is being compliant with the taking the meds ordered by your doctor.
  • Research estimates that at least 1.5 million Americans have a form of lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Most people with lupus develop the disease between the ages of 15-44.
  • Women of color are two to three times more likely to develop lupus than Caucasians.
  • People of all races and ethnic groups can develop lupus.
  • Lupus effects 80% women.
  • Discoid lupus erythematosus—causes a skin rash that doesn’t go away
  • Subacute cutaneous lupus erythematosus—causes skin sores on parts of the body exposed to sun
  • Drug-induced lupus—can be caused by medications
  • Neonatal lupus—a rare type of lupus that affects newborns.      
  • Approximately 1.5 million Americans have a form of lupus.
  • Systemic lupus erythematosus cases: 70% of total lupus cases.
  • Of individuals diagnosed with lupus, 90% are women.
  • Eighty percent of people develop lupus between 15 and 45 years of age.
  • Lupus is two to three times more prevalent among people of color.
  • Chance of a parent or sibling having or developing lupus: 20%

There are 4 major kinds of lupus. Here are the types:

1-Systemic lupus erythematosus (SLE) is the most common and most serious type of lupus.

2-Cutaneous lupus erythematosus, which affects only the skin.

3-Drug-induced lupus, a short-term type of lupus caused by certain medicines.

4-Neonatal lupus, a rare type of lupus that affects newborn babies.

The most common type and serious type of lupus is systemic lupus erythematosus (SLE)

  • Systemic Lupus Erythematosus  or also known as (SLE):
  • The cause(s) of SLE are unknown, however, heredity, viruses, ultraviolet light, and drugs all may play some role.

Signs and Symptoms of Lupus:

1. *butterfly rash on the face – very common symptom with a flare up.

Including other possible symptoms:

2. appetite loss 3. hair loss 4. fever 5. fatigue 6. photosensitivity 7. Raynaud’s phenomenon 8. pleuritis and 9. pericarditis.

  • Up to 10% of people with lupus isolated to the skin will develop the systemic form of lupus (SLE).
  • The criteria listed at the top in the picture help doctors diagnose SLE!

Stayed tune for part II tomorrow on how its diagnosed and the type of treatments!

                                                                                

QUOTE FOR THE WEEKEND:

There have been many advances in CF treatment.

Antibiotics and Anti-inflammatories are used in treat for some with cystic fibrosis.

Antibiotics are frequently needed to treat bacteria that grow in the mucus. These can be given in one of three ways:

  • Orally or by mouth – this is the easiest and cheapest route.
  • By inhalation – this is more expensive but very effective.
  • Intravenously (IV) – this is usually reserved for those who are sicker.

Anti-inflammatory medications have also been found to be helpful in CF. Two medications are currently in use, azithromycin (an antibiotic that’s used as an anti-inflammatory agent in CF), and ibuprofen.

Managing cystic fibrosis is a must!

Regular check-ups with your doctor are needed as patients with CF will require constant monitoring and health management to control symptoms and prevent complications.

Your doctor may request that you receive some other tests depending on your condition. Common tests include blood tests, bone mineral density tests, glucose monitoring, pancreas functionality test, and respiratory cultures. Ultrasounds, chest CTs or X-rays, colonoscopy and a lung biopsy may be needed in some situations.

In addition to doctor visits, lifestyle changes can help manage symptoms. Practicing good hygiene and receiving all recommended vaccines can prevent patients with CF from getting an infection which in turn could lead to more severe complications. To maintain a healthy weight many patients with CF follow healthy, high-calorie, high-sodium diets. Physical activity is also encouraged to help improve and maintain lung function.

Most importantly all patients with CF need to continue treatments, including medicines, supplements, and daily airway clearance techniques as directed by their physicians. Your physician should also be alerted immediately to any complications so that they can provide supplemental medication to help the immune system fight off infection as quickly as possible.”

American Heart Association (https://www.lung.org/lung-health-diseases/lung-disease-lookup/cystic-fibrosis/treating-and-managing)

 

Part III Cystic Fibrosis Awareness Month – Lung Replacement and how far medical advances have taken us!

Cystic Fibrosis has advanced with medical treatments and advocacy by patient groups such as the Cystic Fibrosis Foundation (CFF).

Prior to the 1950s, children with the most common and most serious forms of cystic fibrosis rarely lived past age 5. In the 1950s and 1960s pancreatic enzymes, airway clearance techniques, and antistaphylococcal antibiotics were introduced as treatments and CF life expectancy began to increase.

In the 1960s, average life expectancy grew to age 15 as antipseudomonal antibiotics were added to the treatment arsenal. Also, the first woman known to have CF had a successful pregnancy. Between the 1970s and 1990s, life expectancy gradually increased to age 31, thanks to still more treatments, including lung transplants and DNase.

Then, between 1993 and 2017, median life expectancy leapt to age 44. This means that among those born with CF in the U.S. between 2013 and 2017, half are predicted to live to age 44 or more.

According to the CFF’s Patient Registry, children with CF grow up to lead full, productive lives despite their disease. In 2017, the registry found that:

  • 51 percent of adults with CF work in full- or part-time jobs
  • 42 percent of adults with CF are married or living together
  • 31 percent of adults with CF earned a college degree

Thanks to advances in DNA testing, doctors are identifying more and more people with CF for the first time well into their 50s, 60s, and 70s.

The oldest person diagnosed with CF for the first time in the U.S. was 82, in Ireland was 76, and in the United Kingdom was 79.

Lung transplantation is a process in which you and the family and friends who make up your social support team will need to make thoughtful decisions throughout many phases. These decisions will affect you and your social support team medically, logistically, financially, socially, and emotionally. Starting the conversation early will give you more time to plan ahead by:

  • Getting the help you need to work on anything that could prevent you from being a candidate for transplant.
  • Making it easier for you and your family to make informed decisions.
  • Securing the necessary financial resources while you are still well enough to do so.

Know this:

Does a lung transplant cure cystic fibrosis? No. Cystic fibrosis is a genetic condition so even though the transplanted lungs will not have CF and will never develop it, the rest of the person’s body will continue to have cystic fibrosis.

People can live for 5, 10, or even 20 years after having one. About 87 percent of CF patients who receive lung transplants will live another year. Close to 50 percent of those who receive a lung transplant will survive for an extra 9 years says cysticfibrosis.com.

QUOTE FOR FRIDAY:

“On average, people with CF live into their mid to late 30s. But new treatments are increasing life expectancy.

CF affects several organ systems, including: Respiratory system, Digestive system and the Reproductive system.

Some people carry the CF gene without being affected by the disease. They often don’t know that they are carriers.Cystic fibrosis is inherited. A person with CF had both parents pass the changed gene to them. The birth of a child with CF is often a total surprise to a family. Most of the time there is no family history of CF. Caucasian people are more likely to have CF than people of African, Asian, or Hispanic ancestry.

There is currently no cure for CF. Scientists are investigating gene therapy. Some patients with advanced disease may be considered for surgeries like lung and pancreas transplant.

Goals of treatment are to ease symptoms, prevent and treat complications, and slow the progress of the disease.Treatment generally focuses on the following 2 areas.  Managing lung and digestive problems”.

MAYO CLINIC (https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/symptoms-causes/syc-20353700)

 

Part II Cystic Fibrosis Awareness Month-review of it with how it effects respiratory/GI/reproductive systems, & more!

 

 

Short review of what is cystic fibrosis?

Cystic fibrosis (CF) is a genetic disease. This means that CF is inherited.

Mutations in a gene called the CFTR (cystic fibrosis conductance transmembrane regulator) gene cause CF. The CFTR mutations causes changes in the body’s cell’s electrolyte transport system. Electrolytes are substances in blood that are critical to cell function. The main result of these transport system changes are seen in the body secretions, such as mucus and sweat.

The CFTR gene is quite large and complex. There are many different mutations in this gene that have been linked to CF.

A person will be born with CF only if 2 CF genes are inherited–one from the mother and one from the father.  An individual must inherit two non-functioning CF genes – one from each parent – to have CF. If both parents are carriers there is a 1 in 4 (25 percent) chance that both will pass on the non-functioning gene, which would result in a pregnancy affected with cystic fibrosis.

A person who has only one CF gene is called a CF carrier. They are healthy and don’t have the disease. But they are a carrier of the disease.

CF affects various organ systems in children and young adults, including the following:

  • Respiratory system
  • Digestive system
  • Reproductive system

How does CF affect the respiratory system?

The abnormal electrolyte transport system in CF causes the cells in the respiratory system, especially the lungs, to absorb too much sodium and water. This causes the normal thin secretions in the lungs to become very thick and hard to move. These thick secretions increase the risk for frequent respiratory infections.

Recurrent respiratory infections lead to progressive damage in the lungs, and eventually death of the cells in the lungs.

Because of the high rate of infection in the lower respiratory tract, people with CF may develop a chronic cough, blood in the sputum, and often even have a collapsed lung. The cough is usually worse in the morning or after activity.

People with CF also have upper respiratory tract symptoms. Some have nasal polyps that need surgical removal. Nasal polyps are small protrusions of tissue from the lining of the nose that can block and irritate the nasal cavity. People with CF also have higher rates of sinus infections.

How does CF affect the gastrointestinal (GI) system?

CF mainly affects the pancreas. The pancreas secretes substances that aid digestion and help control blood sugar levels.

The secretions from the pancreas also become thick and can clog the ducts of the pancreas. This may cause a decrease in the secretion of enzymes from the pancreas that normally help digest food. A person with CF has trouble absorbing proteins, fats, and vitamins A, D, E, and K.

The problems with the pancreas can become so severe that some of the cells in the pancreas die. Over time, this may lead to glucose intolerance and Cystic Fibrosis-Related Diabetes (CFRD), a unique type of insulin-dependent diabetes.

The symptoms of CF that may be due to involvement with the GI tract include:

  • Bulky, greasy stools
  • Rectal prolapse (a condition in which the lower end of the bowel comes out of the anus)
  • Delayed puberty
  • Fat in the stools
  • Stomach pain
  • Bloody diarrhea

The liver may also be affected. A small number of people may develop liver disease. Symptoms of liver disease include:

  • Enlarged liver
  • Swollen belly
  • Yellow color to the skin (jaundice)
  • Vomiting of blood

How does CF affect the reproductive system?

Most males with CF have blockage of the sperm canal. This is called congenital bilateral absence of the vas deferens (CBAVD). This results from the thick secretions clogging the vas deferens and keeping them from developing properly. It causes infertility because sperm can’t travel out of the body. There are some newer techniques that allow men with cystic fibrosis to have children. These should be discussed with your healthcare provider. Women also have an increase in thick cervical mucus that may lead to a decrease in fertility, although many women with CF are able to have children.

Who is at risk for cystic fibrosis?

Cystic fibrosis (CF) is inherited, and a person with CF had both parents pass the altered gene to them. The birth of a child with CF is often a total surprise to a family, since most of the time there is no family history of CF.

Symptoms can include with above symptoms the following:

All U.S. states require that newborns be tested for cystic fibrosis (CF). This means that parents can know if their baby has the disease and can take precautions and watch for early signs of problems.

The following are the most common symptoms of CF. However, people may experience symptoms differently, and the severity of symptoms can vary, too. Symptoms may include:

  • Thick mucus that clogs certain organs, such as the lungs, pancreas, and intestines. This may cause malnutrition, poor growth, frequent respiratory infections, breathing problems, and chronic lung disease.

Many other medical problems can point to cystic fibrosis, as well. These include:

Sinusitis, Nasal polyps, Clubbing of fingers and toes. This means thickened fingertips and toes because of less oxygen in the blood, Collapse of the lung often due to intense coughing, Coughing up blood, Enlargement of the right side of the heart due to increased pressure in the lungs (Cor pulmonale), Abdominal pain, Excess gas in the intestines, Rectal prolapse. In this condition, the lower end of the bowel comes out of the anus, Liver disease, Diabetes, Pancreatitis, or inflammation of the pancreas that causes severe pain in the belly, Gallstones, Congenital bilateral absence of the vas deferens (CBAVD) in males. This causes blockages of the sperm canal.

The symptoms of CF differ for each person.

Infants born with CF usually show symptoms by age 2. Some children, though, may not show symptoms until later in life. The following signs are suspicious of CF, and infants having these signs may be further tested for CF:

Diarrhea that does not go away, Foul-smelling stools, Greasy stools, Frequent wheezing, Frequent pneumonia or other lung infections, Persistent cough, Skin that tastes like salt, Poor growth despite having a good appetite.

The symptoms of CF may resemble other conditions or medical problems. See a healthcare provider for a diagnosis.

QUOTE FOR THURSDAY:

“Cystic fibrosis (CF) is a genetic disease that causes sticky, thick mucus to build up in your organs, blocking and damaging them. Many people think of CF as a lung disease because it affects your lungs and airways, which can make it hard to breathe and cause frequent infections. But it’s called cystic fibrosis because it also causes cysts and scarring (fibrosis) in your pancreas. This damage, plus the thick mucus, can block ducts that release digestive enzymes, making it hard to get nutrients from your digestive tract. CF can also affect your liver, sinuses, intestines and sex organs.

The mucus that lines your organs and body cavities, such as your lungs and nose, is thin and watery. In people with CF, a change in a gene (genetic mutation) leads to low levels of certain proteins, or proteins that don’t work properly. Because of these faulty proteins, minerals that move water into your mucus (which thins it out) get trapped inside cells, leaving the mucus thick and sticky.

People with cystic fibrosis are born with it. It’s a lifelong illness that gets more severe over time. Most people with CF don’t live as long as people without it.”

The Cleveland Clinic (https://my.clevelandclinic.org/health/diseases/9358-cystic-fibrosis)