“Fibrodysplasia ossificans progressiva (FOP) is a genetic condition where people are born with bunions and their body’s muscle tissue and connective tissues, like tendons and ligaments, turn into bone on the outside of their skeleton. This condition restricts movement and can cause a loss of mobility over time in people diagnosed with the condition.”
Cleveland Clinic (https://my.clevelandclinic.org/health/diseases/24476-fibrodysplasia-ossificans-progressiva”)
It is a disorder in which skeletal muscle and connective tissue, such as tendons and ligaments, are gradually replaced by bone (ossified). This condition leads to bone formation outside the skeleton (extra-skeletal or heterotopic bone) that restricts movement.
This process generally becomes noticeable in early childhood, starting with the neck and shoulders and moving down the body and into the limbs. People with FOP are born with abnormal big toes (hallux valgus) which can be helpful in making the diagnosis. Trauma, such as a fall or invasive medical procedure, or a viral illness may trigger episodes of muscle swelling and inflammation (myositis). These flareups lasts for several days to months and often result in permanent bone growth in the injured area.
FOP is almost always caused by a mutation at the same place in the ACVR1 gene (The ACVR1 gene provides instructions for making the activin receptor type-1 (ACVR1) protein, which is a member of a protein family called bone morphogenetic protein (BMP) type I receptors.) and is inherited in an autosomal dominant manner. This condition occurs in about 1 in 1,600,000 newborns and about 800 people worldwide are known to have FOP.
-Fibrodysplasia ossificans progressiva (FOP) is characterized by the gradual replacement of muscle tissue and connective tissue (such as tendons and ligaments) by bone, restricting movement. This process generally becomes noticeable in early childhood, starting with the neck and shoulders and proceeding down the body and into the limbs.
-The formation of extra-skeletal bone causes progressive loss of mobility as the joints become affected. Speaking and eating may also become difficult as the mouth becomes affected. Over time, people with FOP may become malnourished because of the inability to eat. They may also develop breathing difficulties as a result of extra bone formation around the rib cage that restricts expansion of the lungs.
-Any trauma to the muscles of an individual with FOP (a fall or an invasive medical procedure) may trigger episodes of muscle swelling and inflammation followed by more rapid ossification in the injured area. Flare-ups may also be caused by viral illnesses such as the flu.
-Affected individuals may also have short thumbs and other skeletal abnormalities.
-Fibrodysplasia ossificans progressiva is inherited in an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder.
-Most cases of fibrodysplasia ossificans progressiva result from new mutations in the gene. These cases occur in people with no history of the disorder in their family. In only a small number of cases, an affected person has inherited the mutation from one affected parent.
-Making a diagnosis for a genetic or rare disease can often be challenging. Healthcare professionals typically look at a person’s medical history, symptoms, physical exam, and laboratory test results in order to make a diagnosis. The following resources provide information relating to diagnosis and testing for this condition. If you have questions about getting a diagnosis, you should contact a healthcare professional.
-The Genetic Testing Registry (GTR) provides information about the genetic tests for this condition. The intended audience for the GTR is health care providers and researchers. Patients and consumers with specific questions about a genetic test should contact a health care provider or a genetics professional.
There is currently no definitive treatment. However, a brief course of high-dose corticosteroids, such as Prednisone, started within the first 24 hours of a flare-up, may help reduce the intense inflammation and tissue swelling seen in the early stages of fibrodysplasia ossificans progressiva. Other medications, such as muscle relaxants, mast cell inhibitors, and aminobisphosphonates, if appropriate, should be closely monitored by a physician. Surgery to remove heterotopic and extra-skeletal bone is risky and can potentially cause painful new bone growth.
References:
“Auto-brewery syndrome (ABS), also known as gut fermentation syndrome, describes the condition in which the concentration of ethanol increases to a noticeable level in the setting of little or no alcohol consumption [2]. It is a rare condition that is more prevalent in patients with underlying gut problems [2,3]. The suggested mechanism of this unique phenomenon revolves around the fermentation of carbohydrates in the human body by microorganisms [3].
ABS stems from the widespread proliferation of gut microorganisms, which, in turn, leads to endogenous production of ethanol. This phenomenon is pre
ceded mostly by the intake of carbohydrate-rich meals or antibiotic use, which can disturb the gut ecosystem [2,10]. It is also frequently associated with underlying pathology. This syndrome is also found to be in patients suffering from other disorders such as Crohn’s disease, short bowel syndrome, and chronic intestinal pseudo-obstruction [12–15].
The causative organisms implicated in ABS include fungi and bacteria, with the most common yeasts being Saccharomyces and Candida species.”
National Library of Medicine NIH (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667719/)
Auto brewery syndrome is a rare condition in which your body turns sugary and starchy foods into alcohol. This can cause symptoms as if you were drunk, even if you haven’t had any alcohol.
Auto-brewery syndrome or gut fermentation syndrome is a condition in which ethanol is produced through endogenous fermentation by fungi or bacteria in the gastrointestinal system, oral cavity, or urinary system. Patients with auto-brewery syndrome present with many of the signs and symptoms of alcohol intoxication while denying an intake of alcohol and often report a high-sugar, high-carbohydrate diet.
The production of endogenous ethanol occurs in minute quantities as part of normal digestion, but when fermenting yeast or bacteria become pathogenic, extreme blood alcohol levels may result. Auto-brewery syndrome is more prevalent in patients with co-morbidities such as diabetes, obesity, and Crohn disease but can occur in otherwise healthy individuals. Several strains of fermenting yeasts and rare bacteria are identified as pathogens. While auto-brewery syndrome is rarely diagnosed, it is probably underdiagnosed. Even rarer are two cases of auto-brewery syndrome identified, one in the oral cavity and one in the urinary bladder.
Various yeasts from the Candida and Saccharomyces families are commensals turned pathogenic that cause auto-brewery syndrome. Several strains of bacteria are also known to ferment ethanol.
Auto brewery syndrome can make you:
Symptoms and side effects are similar to when you are slightly drunk or when you have a hangover from drinking too much:
Auto brewery syndrome can also lead to or worsen other health conditions such as:
Adults and children can have auto brewery syndrome. Signs and symptoms are similar in both. Auto brewery syndrome is usually a complication of another disease, imbalance, or infection in the body.
You can’t be born with this rare syndrome. However, you may be born with or get another condition that triggers auto brewery syndrome. For example, in adults, too much yeast in the gut may be caused by Crohn’s disease. This can set off auto brewery syndrome.
In some people liver problems may cause auto brewery syndrome. In these cases, the liver isn’t able to clear out alcohol fast enough. Even a small amount of alcohol made by gut yeast leads to symptoms.
Toddlers and children with a condition called short bowel syndrome have a higher chance of getting auto brewery syndrome. A medical case reported that a 3-year-old girl Trusted Source with short bowel syndrome would get “drunk” after drinking fruit juice, which is naturally high in carbohydrates.
Other reasons you may have too much yeast in your body include:
There are no specific tests to diagnose auto brewery syndrome. This condition is still newly discovered and more research is needed. Symptoms alone are typically not enough for a diagnosis.
Your doctor will likely do a stool test to find out if you have too much yeast in your gut. This involves sending a tiny sample of a bowel movement to a lab to be tested. Another test that might be used by some doctors is the glucose challenge.
In the glucose challenge test, you’ll be given a glucose (sugar) capsule. You won’t be allowed to eat or drink anything else for a few hours before and after the test. After about an hour, your doctor will check your blood alcohol level. If you don’t have auto brewery syndrome your blood alcohol level will be zero. If you have auto brewery disease your blood alcohol level may range from 1.0 to 7.0 milligrams per deciliter.
If you suspect you have this auto brewery syndrome, you might try a similar test at home, though you shouldn’t use it to self-diagnose. Eat something sugary, like a cookie, on an empty stomach. After an hour use an at-home breathalyzer to see if your blood alcohol level has risen. Write down any symptoms.
This home test may not work because you may not have noticeable symptoms. At-home breathalyzers may also not be as accurate as the ones used by doctors and law enforcement. Regardless of what you observe, see a doctor for a diagnosis.
“Never.
Never do we loose our loved ones.
They accompany us; they don’t disappear from our lives.
We are merely in different rooms, temporarily.”
Paulo Coelo (South American author, who has sold over 165 million books in his lifetime.)
Many look at aging as it sucks but believe or not some look at it as a privilege but how? It’s how you look at it and how you as a child looking up to parents to mentors around you looked at aging. Of course there are those that say “Aging sucks” I have even said that. 2. Aging is a privilege. How is aging a privilege let me explain. A paradox of living is that striving to age healthfully overall can lead to increased longevity, meaning you’ll have more experiences with death the older you get. As we age, so do the people around us. This is just as much a part of the “aging is a privilege” perspective as any of the rest of it. Keep in mind those you die young miss out on those great memories or great experiences you may have had 20 to 50 years of being with that person who died.
Living longer has both joys and consequences. We will lose friends and loved ones to accidents, illnesses, and, as we reach our later years, old age—though we desperately want to know the “whys” of old age losses, seeking answers on how to avoid them.
In Stephen King’s fantasy The Green Mile, the unjustly executed main character passes some of his miraculous life-extending gifts onto a death row guard, forever changing the rest of the guard’s life. Its bittersweet conclusion leaves burning questions as well as heavy food for thought. The guard now possesses a form of near immortality—something he sees as punishment for not being able to stop the prisoner’s execution even though he knew him to be innocent. And he goes on to outlive all the people he loves.
While death I say frequently at the age I am and even before with being a RN about 40 years that its a natural part of life and an unavoidable consequence of aging, it doesn’t mean you won’t be deeply affected by it.
“There but for the grace of God go I” is often a saying on the tops of our minds as we join other mourners. But it is the very fact that we are there with others that defines our affirmation that life is indeed precious.
While you may not be able to predict how grief will affect you, having a support system in place and the skills necessary to care for your mental health will offer a foundation from which to continue this amazing thing called life.
Our unique personalities and experiences often influence how we think about death, but other factors enter into our approach to it. The culture in which we were raised can shape our beliefs and perceptions of death. How? Because the way the people around us perceive and react to grief affects our feelings as well.
Why is it that we feel differently about the loss of a person we know depending on how they left us? A sudden fatal car accident, a long-drawn-out illness, or the fact that they decided to end their own suffering—any of these conjure up feelings and opinions in us that are hard to shake—most of which were passed on to us by our parents. “She lived a long time.” “What a tragedy to see a life end that early.” “It’s too bad he didn’t take better care of himself.” “At least she is no longer in pain.” No matter what words we use to justify, judge, or comfort ourselves, the fact remains that that person is no longer around. The key is to acceptance and to know how to deal with the emotions you’re having instead of analyzing the timing or the circumstances that led to it. In that way, you can begin to celebrate that person’s time here on Earth in the spirit of appreciation.
Some of us have cared for loved ones like myself and still am, watching the physical part of the process happen before our eyes. We may have gently washed a loved one’s face, moved them around to change their bedding, and noticed the many physical changes that took place. The thing is, fear (of the unknown) is simply a normal human reaction for both the caregiver and the one ailing. Though I must say being a RN helped in so many ways in the acceptance of death with having religious background and still practicing to this day.
You can think you’re doing well with the losses happening around you, but don’t be surprised that you can phase in and out of the feelings you experience both now and in the future. You may have remember something due to something you see, smell, hear, or touch.
Some say they may be “at peace” with a particular loss. I say that especially when someone was sick and in a terminal drawn out diagnosis. I have seen too often. But even getting there doesn’t necessarily spell relief once it’s reached. The fact is, we won’t all experience death and dying in the same way. Our unique experiences may even change as we age and are confronted with death more often.
So, the best we can say about it is that the physical, emotional, and spiritual aspects of dying that are distressing and confusing are just plain outright normal. especially for humans since we have a heart and feelings. The thing to remember is that we are not alone. Don’t hesitate to reach out to someone you know and trust to “vent” awhile over the loss of someone you knew, whether it’s a long-distance loss or one you witnessed personally. Our friends and family often don’t know how to act around us even though they want to help.
“Losing a friend is a painful and difficult experience that many of us will face at some point in our lives if not already. Friendship is a unique and special bond that brings joy, support, and companionship into our lives. When we lose a friend, we not only grieve the loss of their presence, but also the loss of the connection and shared experiences that we had with them. Friendship is a unique relationship that often goes beyond the boundaries of family or romantic partnerships. Friends are the people we choose to bring into our lives, and they become an integral part of our support system. When we lose a friend, it can feel like losing a piece of ourselves. The impact of losing a friend can be profound, as it disrupts our daily routines, social dynamics, and emotional well-being. The emotions experienced when losing a friend can be intense and overwhelming. Grief is a natural response to loss, and it can manifest in various ways. It is important to acknowledge and validate these emotions, as they are a normal part of the grieving process.
Also if it gets heavy for you in coping with this loss whether loss of a friend or a loved one significant to you on spouse or romantic level, it is important to seek professional help if needed there is nothing wrong with professional help or counseling. Everyone grieves at their pace and you being there with allowing them to go at that pace friend/family or professional support is always helpful.
Engaging in self-care activities is another important coping strategy for dealing with the loss of a friend. Self-care involves taking care of your physical, emotional, and mental well-being. This can include activities such as exercise, meditation, journaling, spending time in nature, or engaging in hobbies that bring you joy. Taking care of yourself during this difficult time is essential for healing and moving forward.
Connecting with others who have experienced similar loss can also be beneficial. Support groups or online communities provide a space to share your experiences, gain support from others who understand your pain, and learn from their coping strategies.
Looking at the good times and celebrating the loss is always a good step in the right direction for grieving and letting you know its not over but at a completely different positive level till you see each other again.”
Legacy Family Services (https://www.legacyfs.org/friendship-farewell-navigating-the-grief-of-losing-a-companion/)
I lost a good friend in my life, Fran Mazza. and I dedicate this article to you. Fran I know you went through a challenge with cancer (Gleoblastoma) for about 4 plus years but you I know are in heaven, at peace, and without question in a place of beauty! You are in a place of ecstasy that so many can and can’t relate to. Most importantly you are out of misery and no longer fighting this terrible diagnosis of cancer. Rest in peace my friend till we meet again! For me goodbyes are not forever; goodbyes are not an end. It simply means you will be missed greatly but I will remember the great times I and Chris had with you and the family till we meet again. I know you are watching over family and friends right now which we need in going through this time; you were and still are a beautiful person to me.
Anyone out their who has had a loss recently I can relate to the feelings you might be experiencing and my deepest condolences to you but know you can cope with this in time. All who pass on are in a better world and both are so much happier out of misery especially if it was fight in staying alive but maybe harder for those who could not prepare for it over some time. Know it is us on earth in misery but it will heal in time like a wound. The other thing to know is that individual or individuals have never left us. They are both with old and new loved ones that they saw all the time and some rarely when they were living on earth but left years or months ago before the significant one you just lost. They will never leave us and help us get through this rough time just like my father did in the late 1990’s when he died of cancer but never left me. I know my deceased family and friends are so much happier, no longer ill and they are with family now and friends they missed terribly with others that they have not seen for a long time. Know this, those who where terribly ill are no longer fighting to stay alive or to breath to their last breath. Instead now they are keeping a close eye on you and all loved ones they had in their life. As long as that person in my life who left me from earth is better off I know that is for the best which overrides my misery. My faith and being a RN over over 37 years seeing so many types of patients and some who may have passed on all types of units including oncology, burn units, all types of med surg, telemetry (cardiac), stroke, hospice and more might make it easier for me in dealing with death than some but trust me I still have feelings like everyone else in this world. God has his reasons for taking those significant in our life to leave this world and we may not understand why but we will in time whether it be in this world or the next. I am very thankful I had the time to see my loved ones significant in my life during my lifetime on earth and I put myself in that person’s shoes who struggled to stay alive and now is gone. I ask myself would you want the people down here on earth hurting and in misery for a long time, if you died and I say no to myself and you probably would say the same. So if you do agree with this apply this positive attitude for when you loose someone significant in your life it may just help you get through the struggle your going through.
Grief is a natural response to loss. It’s the emotional suffering you feel when something or someone you love is taken away. The more significant the loss, the more intense the grief will be. You may associate grief with the death of a loved one—which is often the cause of the most intense type of grief—but any loss can cause grief, including: divorce, loss of health, loss of a job, loss of financial stability, retirement, loss of a friendship, loss of a cherished dream (ex. spouses in their own business, planning to get married that never happens, loss of a mortgage on a new home, a loss of a baby, etc…).
The more significant the loss, the more intense the grief. However, even subtle losses can lead to grief. For example, you might experience grief after moving away from home, graduating from college, changing jobs, selling your family home, or retiring from a career you loved.
Grieving is a personal and highly individual experience. How you grieve depends on many factors, including your personality and coping style, your life experience, your faith, and the nature of the loss. The grieving process takes time. Healing happens gradually; it can’t be forced or hurried—and there is no “normal” timetable for grieving. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your grief experience, it’s important to be patient with yourself and allow the process to naturally unfold.
Dr Elisabeth Kübler-Ross pioneered methods in the support and counselling of personal trauma, grief and grieving, associated with death and dying. She also dramatically improved the understanding and practices in relation to bereavement and hospice care. This is quite aside from the validity of her theoretical work itself, on which point see the note, right.
Her ideas, notably the five stages of grief model, the model was first introduced by American Psychiatrist Elisabeth Kübler-Ross in her 1969 book, On Death and Dying, and was inspired by her work with terminally ill patients but simply a significant loss can experience these steps as well. They are: 1.) Denial 2.) Anger 3.) Bargaining 4.) Depression 5.) Acceptance . You go through all these steps in a loss and repeat them and not in order for all. Contrary to popular belief, you do not have to go through each stage in order to heal. In fact, some people resolve their grief without going through any of these stages. And if you do go through these stages of grief, you probably won’t experience them in a neat, sequential order, so don’t worry about what you “should” be feeling or which stage you’re supposed to be in.Kübler-Ross herself never intended for these stages to be a rigid framework that applies to everyone who mourns. In her last book before her death in 2004, she said of the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.”
While loss affects people in different ways, many experience the following symptoms when they’re grieving. Just remember that almost anything that you experience in the early stages of grief is normal—including feeling like you’re going crazy, feeling like you’re in a bad dream, or questioning your religious beliefs.
Symptoms of Grief: Shock and disbelief – Right after a loss, it can be hard to accept what happened. Sadness – Profound sadness is probably the most universally experienced. Guilt – You may regret or feel guilty about things you did or didn’t say or do. Anger – Even if the loss was nobody’s fault, you may feel angry and resentful. If you lost a loved one, you may be angry with yourself, God, the doctors, or even the person who died for abandoning you. You may feel injustice has been done to you. Fear – A significant loss can trigger a host of worries and fears. You may feel anxious, helpless, or insecure. You may even have panic attacks. You may feel fears of how do I live without this person. Physical Symptoms – We often think of grief as a strictly emotional process, but grief often involves physical problems, including fatigue, nausea, lowered immunity, weight loss or weight gain, aches and pains, and insomnia.
Coping with grief and loss is one get support.
The single most important factor in healing from loss is having the support of other people. do not grieve alone. Connecting to others will help you heal.
7. MAYO CLINIC 2012
“To relieve chronic pain, healthcare providers first try to identify and treat the cause. But sometimes they can’t find the source. If so, they turn to treating, or managing, the pain.
Healthcare providers treat chronic pain in many different ways. The approach depends on many factors, including:
The best treatment plans use a variety of strategies, including medications, lifestyle changes and therapies.
If you have chronic pain and depression and/or anxiety, it’s important to seek treatment for your mental health condition(s) as well. Having depression or anxiety can make your chronic pain worse. For example, if you have depression, the fatigue, sleep changes and decreased activity it may cause can make your chronic pain worse.
Your healthcare provider may recommend certain medications to relieve chronic pain, including:
Other medical treatments your healthcare provider may have you try include:
The key is through PREVENTION of pain through the following:
Four major lifestyle factors can affect your chronic pain and help minimize it. Healthcare providers sometimes call them the four pillars of chronic pain. They include:
Cleveland Clinic (https://my.clevelandclinic.org/health/diseases/4798-chronic-pain)
“Leading causes of death regarding Mortality:
Mortality was caused by Alzheimer’s disease and other dementias, self-harm (suicide), hypertensive heart disease, chronic kidney disease, and liver cancer have shown the largest percentage change from 2000 to 2019; this was for both male and female.”
Pan American Health Organization (https://www.paho.org/en/enlace/leading-causes-death-and-disability)
2- “Suicide is a major public health concern. Suicide is among the leading causes of death in the United States. Based on recent mortality data, suicide in some populations is on the rise according to the CDC; which states for 2021:
National Institute of Mental Health – NIH (https://www.nimh.nih.gov/health/statistics/suicide)