Tips for Living with Cystic Fibrosis

Decades ago, cystic fibrosis (CF) was thought of as an early death sentence. Living with CF meant spending much of one’s time struggling to breathe and trying to avoid suffering until succumbing to an untimely death in early childhood. Fortunately, this is no longer the case. Today, people with cystic fibrosis are living longer than ever, usually into middle-adulthood. Today’s generation is discovering that living with CF means learning to cope, daring to hope, and finding a new normal.

Learning How to Cope With a CF Diagnosis

A CF diagnosis is incredibly difficult and every family reacts differently. Learning that your child has a potentially fatal disease is a life-altering experience. Once the initial shock fades, you can begin to build your toolbox of CF coping skills and techniques to care for your child.

Here are four items every CF toolbox should include.

Knowledge. Ask, watch, study, and read everything about CF you can get your hands on. There is a lot to learn, so it’s only natural that you will have a lot of questions along the way. Take notes! Don’t rely on your memory, it will fail during stressful periods. Write down any questions you may have in a pocket-sized notebook. Keep your notebook with you at all times and be ready to reference your notes each time you see your doctors.

Support. Get involved with support groups. Connect with other CF patients and their families.

Nobody knows what you are going through quite like someone who has already been down the same path. Surround yourself with people who can guide you as you forge your own path.

A plan.  Getting through daily life with CF can be overwhelming. Become familiar with all of the treatments, medications, and therapies you will need to manage your child’s condition.

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Create a plan that schedules all of these activities –– medications, therapy, other treatments –– into your daily routine.

Strength. You may hear a lot of discouraging words from well-meaning but misinformed people. Remember that cystic fibrosis used to be a lot of things that it no longer is. However, others may not know this. You can educate others about CF, but if you prefer not to that’s fine too. Expect to encounter negativity, but don’t let it get the best of you. Try and filter out the background noise and listen to those with the most CF experience, like your child’s health care providers.

Planning For a Full Life With CF

Now that you’ve developed a strategy for coping with a CF diagnosis, the next step is to begin planning for the immediate and long-term future. Children with CF can plan for life as adults because we’ve learned better ways to treat CF. Preventing damage from an early age on is the only way to give children with CF a chance to become adults. This is a big responsibility for parents and involves some necessary sacrifice.

Here are three ways to ensure that your child has the best future possible.

  1. Establish a routine. CF treatment usually requires taking medicines before each meal, inhaling medicines a couple of times a day, and having therapy treatments up to four times per day. Fitting these things into your life can be a challenge. However, consistency is the key to success. Scheduling everything you need to do can help save time and ease the burden.
  1. Be diligent. Once you have a routine, try and stick with it. When things get hectic, you may be tempted to skip a treatment or postpone a medication. Don’t do it! Missing even one step of a treatment routine can cause major setbacks. Sticking to a routine will help you stay on course and teach your child good habits for the future.
  2. Learn to juggle. Many parents of children with CF find that they become so consumed with their child’s needs that they forget to take care of their own. Don’t let this happen or you will quickly run out of steam. CF is a lifelong commitment. It’s not going to go away. You’ll need to find ways to make it a part of your life without letting it be your entire life.

Learning to live with CF can be stressful for everybody involved, but it is often terrifying for siblings who may be too young to understand what living with CF means. Older siblings may fear that their brother or sister is going to die, be jealous of all the attention their sick sibling gets, or feel guilty that they are healthy and their brother or sister is not. It’s important to include siblings in the equation, making sure they don’t get lost in the shuffle.

Discovering a New Kind of Normal

Life changes after a CF diagnosis. Even after your child has reached adulthood, CF will still play a big part in your life. Your child may require some help with physical care even as he or she gets older. Plus, you will still need to consider their treatment schedule when planning family events.

With a few tweaks here and there, your child can live a relatively normal life. People with CF can go to school, have friends, play sports, get married and have children, and even have a successful career.

You can dream big even if you, or your child, have CF. Set short-term goals to help you accomplish your life plan, but be flexible. You may need to make some adjustments along the way.

A pill to treat coeliac disease? Not quite – here’s what the science says

Recent headlines proclaimed an Australian-developed pill might help those with coeliac disease eat wheat without becoming ill.

The pill, GluteGuard, was developed by the Melbourne-based biotech company Glutagen. It contains an enzyme called caricain, found naturally in papaya, which can break down proteins, including gluten.

But GluteGuard is not suitable as a treatment for coeliac disease. This position is supported by Glutagen’s disclaimer, which states the product is not a suitable replacement for a gluten-free diet and should not be used to “treat, prevent or cure” any disease.

According to Coeliac Australia, the only treatment for coeliac disease is “the strict, life-long avoidance of foods containing gluten”. The potential complications of consuming gluten for people living with coeliac disease are serious and include osteoporosis, anaemia and some cancers.

Remind me, what is coeliac disease?

Coeliac disease is an autoimmune condition, where sufferers react to gliadin, one of the two proteins that make up gluten. Gluten – the substance that gives wheat dough its stretch – causes the immune system to destroy the microscopic villi (the finger-like lining) of our intestine which absorb nutrients from our food.

Non-coeliac gluten sensitivity is a wide range of conditions that can mimic the diarrhoea, discomfort and bloating seen with coeliac disease. However, it does not result in antibodies appearing in the blood or the damage to the intestine typical of coeliac disease.

Non-coeliac gluten sensitivity can often be mistaken for irritable bowel syndrome (IBS). Although people with IBS are often advised to use gluten-free foods, this is not related to the gluten. Instead it is linked to particular carbohydrates that people with IBS struggle to digest, which are known as FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides and polyols). FODMAPs are often found in grains containing gluten such as wheat, rye and barley.

Coeliac disease is diagnosed by a blood test and biopsy sample from the intestine. If tests are clear, IBS and non-coeliac gluten intolerance may be diagnosed.

What does the science say?

The Glutagen website says the product is designed to digest gluten.

But other sources suggest caricain is a general protein-digesting enzyme, meaning it could break down any protein, not just gluten. This isn’t necessarily a problem, but could influence the amount of enzyme needed if you’re also consuming large amounts of protein – for instance, in a burger.

It is possible that caricain enzymes could reduce the symptoms for someone with non-coeliac gluten sensitivity but is not an advisable treatment for coeliac disease. Although the enzymes may help break up gluten, it is unlikely that in people with coeliac disease it would be able to adequately digest dietary gluten enough to avoid risk of long-term damage.

At the moment, it is not a suitable replacement for a gluten-free diet.

GluteGuard is not unique; similar enzyme products have or are undergoing trials in Europe and the United States.

Research into GluteGuard and similar enzyme products shows some interesting initial findings. After taking enzyme pills, users with coeliac disease or non-coeliac gluten sensitivity may have improved tolerance to gluten, with fewer symptoms and possibly less damage to the intestine.

However, the control group (those who didn’t receive the enzyme pills) did not all get worse, so it’s hard to say definitively the enzyme pills are better than the dummy pills. The measurements of effects on the immune system (antibodies that recognise proteins in gluten) and intestines (damage to the lining) were inconsistent.

The quality of the research published, including work linked to the Australian product, which was carried out in Poland, could also be questioned. The researchers used a small number of patients; and the research design did not meet the expected standards.

If the manufacturer states the product should not be used to treat any disease including coeliac disease, how is it listed with Australia’s regulator, the Therapeutic Goods Administration (TGA) as a complementary medicine?

The scheme it is registered under states it should not contain a poison and only approved ingredients. This is a largely self-certified scheme, and so it only has to be safe and it does not necessarily have to work.

Small benefit for some

All this appears to have parallels with the A2 milk story. This milk does not help people with cow’s milk allergy or lactose intolerance, but may have some modest benefits for those who report being intolerant to milk protein.

The risk with both A2 milk and gluten digesting enzymes is that consumers choose these products thinking they will help their conditions, but they could in fact be harmful.

Although products such as these may have some benefits, they’re likely to be useful only for a small group of people. And at just under A$45 for 60 tablets, GluteGuard is expensive to try.

Instead, people with coeliac disease should aim to maintain a strict gluten-free diet.

Exercising with Early Stage Multiple Sclerosis

I’ve got early stage MS. I know I need to exercise, but I don’t know what to do.

MS can be a very cruel condition with an outlook which is less than optimistic, but what can you do to minimise the impact of the illness? In the following text I hope to show you what to do and why it’s important that you get it right.

Firstly, exercise for someone with MS is as important, if not more important than it is for everybody else. I say that, but really it is far more important. You need to do it right because I see far too many medical professionals telling people who have recently been diagnosed with MS that they need to “exercise” without any guidelines on what type of exercise to do.

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11 landmark moments in the history of Parkinson’s disease

From the first experiments with levodopa more than 50 years ago to the revolutionary development of deep brain stimulation, the history of Parkinson’s disease stretches back more than two centuries. This timeline charts some of the landmark moments, since initial discovery until today’s advances, that together make up the 200-year history of Parkinson’s disease.

1755: Birth of Dr James Parkinson

Dr James Parkinson, whose birthday on 11 April is commemorated annually as World Parkinson’s Day, was a well-respected surgeon, apothecary and political activist. Dr Parkinson wrote a great deal on social reform, geology and medicines and is considered to have been a visionary in each field. Parkinson’s greatest legacy, however, was his discovery and subsequent essay on ‘the shaking palsy’, a condition that would be named after the surgeon.

Parkinson’s essay is still viewed as a detailed, accurate and knowledgeable description of the illness, despite it being the first of its kind. In 1817, when Dr Parkinson first recognised the condition, there had been no previous research on the subject. Parkinson’s essay laid the groundwork for those who built on his research over the course of the next two centuries.

James Parkinson - blue plaque

Dr James Parkinson’s commemorative plaque in London, UK

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8 Home Remedies for Psoriasis You Won’t Believe

Approximately 7.5 million people in the US are currently suffering from psoriasis. It’s a disease spread much wider than one would believe, which prompted us to create this list of wonderful home remedies for psoriasis you can start trying as we speak. Medicines and special ointments are recommended as well, but when the cure lies in your pantry, wouldn’t it be better to give that a try?

What Is Psoriasis?

Simply put, psoriasis is a very pesky skin condition, extremely persistent and very hard to cure. The basic science behind it is that people who suffer from this disease have skin cells that multiply some 10 times faster than normal ones do. When the layers of skin cells underneath reach the surface, as they need to, then dry out and die, the sheer quantity is so big that they become a type of reddish plaque covered in white scales.

Psoriasis is most common in elbows, knees, and one’s scalp, but it may also occur on the palms and soles of the feet and the torso.

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How Hydrocephalus Causes Cerebral Palsy

Sometimes we look to our Facebook Page for ideas on what parents and the public are looking to better understand about CP. A common topic that has come up is how hydrocephalus causes Cerebral Palsy. Hydrocephalus itself is a less understood topic, and so determining its connection with a complex condition like Cerebral Palsy can be understandably difficult.

Let’s go through the basics on hydrocephalus and Cerebral Palsy:

What Is Hydrocephalus?

Hydrocephalus is a term that breaks down as hydro (water) and cephalus (loosely meaning ‘head’). As such, hydrocephalus was formerly described as ‘water on the brain,’ though the fluid within the head is not water but, instead, cerebrospinal fluid (CSF). This fluid is intended to provide nutrition and support to the brain but, when it does not absorb properly, instead builds up within the skull. When it accumulates enough, the fluid causes the malleable skull to stretch, causing the extended shape that marks the condition.

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8 Ways to Handle a Narcissist

A tendency toward narcissism is present in everyone, to more or less of a degree. Sometimes you don’t know if someone’s particularly high in this personality quality until you’ve gotten deeply involved in a relationship and come to realize that the very qualities that attracted you to a person are the narcissistic qualities that now annoy you. You may have a sibling, parent, or other relative whose narcissistic personality traits you’re forced to confront but can’t control or challenge. Or you may be forced to work with a boss, co-worker, teacher, student, or employee with strongly narcissistic tendencies.

Just because some people are narcissists doesn’t mean they’re unlovable. People high in narcissism may also be fun, charismatic, or good at what they do. Having them around gives you more pleasure than pain and, in the workplace, enhance your team’s success. You may, if you have a choice in the matter, prefer the idea of “reforming” the narcissist in your life rather than leaving him or her by the wayside. (Some people’s narcissism may make them so vulnerable to rejection that you fear that harm will come to them if you shunt them aside.)

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When Your Loved One Has Borderline Personality Disorder

Personality disorders are a unique category in the world of mental illness. While someone with depression or anxiety may feel that they are experiencing symptoms that are different from their normal state, people with personality disorders often fail to realize that their emotions and reactions depart from the typical human experience. People with borderline personality disorder (BPD) struggle to understand how wives, husbands, friends, and other family members experience their intense reactions, mood swings, and risky behavior.

Needless to say, if you have a loved one with BPD, life can be fraught with crises and conflict. You might feel like you’re being held hostage, worrying that your family member will injure themselves if you don’t appease them.  You may wonder whether you should let them borrow money again or answer the dozens of voicemails they left on your phone. Dealing with borderline personality disorder requires skills for deescalating crises and fostering independence in your loved one.  With the right tools and community strategies, it is possible to help your loved one towards recovery.

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Tips to Aid Ankylosing Spondylitis Treatment

Ankylosing Spondylitis is a condition that causes inflammation of the joints. Over a period of time, this tends to progress to stiffness and lack of flexibility. Sometimes, it may also go on to a condition called bamboo spine where the bones of the spine get fused. In addition to medicines for controlling the pain, the following tips help in your ankylosing spondylitis treatment:

Shake up the Mornings:

Most people find that their stiffness and pain is worst in the mornings. Do not jump right into your routine. Gentle motions or movements of all your joints while you are in bed can help smooth your joints into a working condition. A warm bath or shower in the mornings can also help to loosen up your muscles and ease the fluids in your joints. Some even find exercising in the shower to be a good start to their day!

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Could Parkinson’s disease be sexually transmitted?

THE sexually transmitted virus hepatitis could increase a person’s risk of Parkinson’s disease, experts have warned.

The viruses themselves, or treatment to combat them, could leave someone at greater risk of developing the debilitating neurological condition, they said.

Another explanation, according to the team from the University of Oxford, is that people who are susceptible to hepatitis could also be more susceptible to Parkinson’s.

The hepatitis virus affects the liver, and if left untreated can prove fatal.

In the UK around one in every 350 people live with chronic hepatitis B.

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