“Doctors will diagnose cancers of the brain or central nervous system in about 25,400 people in the United States in 2024, according to the National Cancer Institute. These cancers make up a portion of the more than 94,000 brain tumors (including benign tumors) that will occur in this country in 2024.

There are many types of brain and spinal cord tumors. The tumors result from the abnormal growth of cells and may be either benign or malignant. Benign brain and spinal cord tumors grow and press on nearby areas of the brain. Normally, they rarely spread into other tissues.

Malignant brain and spinal cord tumors are likely to grow quickly and spread into other brain tissue.

Unfortunately, when a tumor grows into or presses on an area of the brain, it may stop that part of the brain from functioning normally. Both benign and malignant brain tumors produce signs and symptoms and need treatment.

Tumors that start in the brain are called primary brain tumors. Primary brain tumors may spread to other parts of the brain or to the spine. But they rarely spread to other parts of the body.

Many tumors found in the brain actually started somewhere else in the body and spread to the brain later after found intially with cancer somewhere else in the body. These are called metastatic brain tumors, and they are more common than primary brain tumors. In fact, about half of metastatic brain tumors are from lung cancer. Even after these tumors spread to the brain, they are still called lung cancer, or wherever they originated.”.

American Association of Cancer Research (https://www.aacr.org/patients-caregivers/awareness-months/may-is-brain-cancer-awareness-month/)

“Ehlers Danlos syndrome (EDS) is a group of hereditary connective tissue disorders that manifests clinically with skin hyperelasticity, hypermobility of joints, atrophic scarring, and fragility of blood vessels. It is largely diagnosed clinically, although identifying the gene encoding the collagen or proteins interacting with it is necessary to identify the type of EDS. Identifying the type of EDS to guide management and counseling is important. In 2017, a new international classification of EDS was proposed with 13 different variants. This syndrome is heterogeneous and has been classified into six types (classical, vascular, hypermobile, arthrochalasis, kyphoscoliotic, and dermatosparaxis), with the causative collagen pathology being different for each type.

The pathophysiology of most Ehlers Danlos syndrome subtypes involves heritable mutations in collagen synthesis and/or processing. The inheritance pattern of these mutations is variable, including autosomal dominant and recessive inheritance involving different mutations; however, it is worth noting that there are reports of spontaneous mutations causing identical genotypes and phenotypes. The collagen affected by these mutations is integral to every body system, from the skin to the integrity of the vasculature, and as such, the symptoms of the disease can be variable and widespread.

The skin is usually white in color and soft to the touch, and underlying vessels can become apparent. The skin has a doughy feel and is easily hyperextensible. It is easily stretchable and immediately returns to its original state after release. Molluscoid pseudotumors are small, spongy outgrowths observed over scars and pressure points. They are commonly found in patients with type I EDS.

Smaller, deep, and movable nodules are often palpable in the subcutaneous tissue. They can be observed in the arms and over the tibia. Radiography may reveal calcification. The fragility of dermal skin with frequent bruises and lacerations is common. The joints are hyperextensible, but the degree of involvement varies. The digital joints are most commonly influenced, but alterations can be present in all the joints.”

National Library of Medicine-NIH (https://www.ncbi.nlm.nih.gov/books/NBK549814/)

each pt varies in intensity

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.

People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn’t strong enough to hold them.

A more severe form of the disorder, called vascular Ehlers-Danlos syndrome, can cause the walls of your blood vessels, intestines or uterus to rupture. Because vascular Ehlers-Danlos syndrome can have serious potential complications in pregnancy, you may want to talk to a genetic counselor before starting a family.

Symptoms of Ehlers-Danlos syndrome:

There are many different types of Ehlers-Danlos syndrome, but the most common signs and symptoms include:

• Overly flexible joints. Because the connective tissue that holds joints together is looser, your joints can move far past the normal range of motion. Joint pain and dislocations are common.
• Stretchy skin. Weakened connective tissue allows your skin to stretch much more than usual. You may be able to pull a pinch of skin up away from your flesh, but it will snap right back into place when you let go. Your skin might also feel exceptionally soft and velvety.
• Fragile skin. Damaged skin often doesn’t heal well. For example, the stitches used to close a wound often will tear out and leave a gaping scar. These scars may look thin and crinkly.

Symptom severity can vary from person to person and depends on the specific type of Ehlers-Danlos syndrome that you have. The most common type is called hypermobile Ehlers-Danlos syndrome.

Vascular Ehlers-Danlos syndrome

People who have vascular Ehlers-Danlos syndrome often share distinctive facial features of a thin nose, thin upper lip, small earlobes and prominent eyes. They also have thin, translucent skin that bruises very easily. In fair-skinned people, the underlying blood vessels are very visible through the skin.

Vascular Ehlers-Danlos syndrome can weaken your heart’s largest artery (aorta), as well as the arteries to other regions of your body. A rupture of any of these larger blood vessels can be fatal. The vascular type can also weaken the walls of the uterus or large intestines — which also may rupture.

Causes:

Different types of Ehlers-Danlos syndrome are associated with a variety of genetic causes, some of which are inherited and passed on from parent to child. If you have the most common form, hypermobile Ehlers-Danlos syndrome, there’s a 50% chance that you’ll pass on the gene to each of your children.

Complications:

Complications depend on the types of signs and symptoms you have. For example, overly flexible joints can result in joint dislocations and early-onset arthritis. Fragile skin may develop prominent scarring.

People who have vascular Ehlers-Danlos syndrome are at risk of often fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, also may rupture. Pregnancy can increase the risk of a rupture in the uterus.

Prevention:

If you have a personal or family history of Ehlers-Danlos syndrome and you’re thinking about starting a family, you may benefit from talking to a genetic counselor — a health care professional trained to assess the risk of inherited disorders. Genetic counseling can help you understand the inheritance pattern of the type of Ehlers-Danlos syndrome that affects you and the risks it poses for your children.

Diagnosing Ehlers-Danlos syndrome:

Diagnosing rests on the criteria, physical examination, and quite often an extensive detailed family history by the M.D.  Extremely loose joints, fragile or stretchy skin, and a family history of Ehlers-Danlos syndrome are often enough to make a diagnosis. Genetic tests on a sample of your blood can confirm the diagnosis in rarer forms of Ehlers-Danlos syndrome and help rule out other problems. For hypermobile Ehlers-Danlos syndrome, the most common form, there is no genetic testing available.

Treatments:

Unfortunately there is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications through the following:

Medications

Your doctor may prescribe drugs to help you control:

• Pain. Over-the-counter pain relievers — such as acetaminophen (Tylenol, others) ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve) — are the mainstay of treatment. Stronger medications are only prescribed for acute injuries.
• Blood pressure. Because blood vessels are more fragile in some types of Ehlers-Danlos syndrome, your doctor may want to reduce the stress on the vessels by keeping your blood pressure low.

Physical therapy

Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles and stabilize joints are the primary treatment for Ehlers-Danlos syndrome. Your physical therapist might also recommend specific braces to help prevent joint dislocations.

Surgical and other procedures

Surgery may be recommended to repair joints damaged by repeated dislocations, or to repair ruptured areas in blood vessels and organs. However, the surgical wounds may not heal properly because the stitches may tear through the fragile tissues.

“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)

“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)

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)

“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)

“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)

“Cause: Hepatitis D virus and hepatitis E virus. Hepatitis D virus infection always occurs with hepatitis B infection, either with a chronic hepatitis B infection (superinfection) or as two simultaneous new infections (coinfection).

Illness and treatment: Hepatitis D and E typically have abrupt onset of fever, nausea, and abdominal pain followed by jaundice. Hepatitis D may progress to chronic hepatitis.

Sources: Humans are the reservoir for hepatitis D, which is usually transmitted by contact with blood or body fluids, particularly sharing drug paraphernalia. Humans and animals (swine) are the reservoir for hepatitis E which is transmitted most commonly through fecally contaminated food, water, and environment.

Additional risks: Pregnant women have higher risk for hepatitis E complications. Japan has reported more virulent hepatitis E strains.

Prevention: To avoid simultaneous hepatitis B infection, immunize all children and any adults with risks for exposure. Use safe sexual practices, avoid sharing drug paraphernalia, and screen blood and tissue products to prevent hepatitis D transmission. Use precautions while traveling to ensure safe food and water to avoid hepatitis E infection.

Recent Washington trends: Reports are rare. Cases of hepatitis D are typically associated with injection drug use. Cases of hepatitis E are typically travel associated.”

Washington State Dept of Health (https://doh.wa.gov/public-health-provider-resources/notifiable-conditions/hepatitis-d-and-e)