Cystic Fibrosis – A Brave World of Hope

Cystic Fibrosis A brave new world

The very serious condition known as cystic fibrosis affects over 30,000 Americans and can be classified, at present, as an autosomal genetic disorder affecting most seriously the lungs, respiratory system, pancreas and digestive system. “It is characterized by abnormal transport of chloride and sodium across an epithelium, leading to thick, viscous secretions.” For sufferers of CF, hope seems dim.  Though life expectancy rates for those living with this disorder have risen significantly over the years (some reaching into their 50′s) CF carries still largely live in a world of medication, surgery and breathing assistance devices. With more and more discoveries being made in both alternative treatments as well as modern medicine, those who suffer from cystic fibrosis walk forward bravely into the hope of a new world of possibilities.

Many who live with cystic fibrosis or assist children or family members with this ailment are all too familiar with the demands such a condition can place upon them, many of them for the duration of ones life. Much effort and attention is directed toward raising awareness and funding to find greater methods for treating CF in hopes of finding a cure. As of today, according to the medical world, there is no known permanent cure, only ways of easing the suffering of those who find themselves thick with this ailment. Many turn to lung transplants in order to lengthen life span and improve the quality of their life. Sometimes this works, and other times, as with other transplants, success is not always the end result. Not always, but sometimes, due to the immunosupressant drugs, infections can find their way into new lungs without the body’s ability to fight them off. Often times, new lungs go on to be the best thing these people have ever done bringing a sort of rebirth into their previously dismal battle with the dis-ease.

Acidic State may contribute

Though there is no known cure according to medical science, alternative medicine sees things in a slightly different light. According to research done by Dr. Robert Young, “All disease or dis-ease, including CF is caused by individual lifestyle and dietary choice or for children how parents are feeding and caring for their children.” This seems like a harsh statement, but according to Dr. Young, who works intimately with all kinds of disorders, he states that cystic fibrosis, like other ‘-osis’ dis-eases are cases of an over acidic condition in the body which can be brought more fully under control through dietary measures.

Dr. Young explains further:  “When you choose or parents choose for their children to eat acidic foods or drink, such as animal flesh, eggs, dairy products, like cheese, yogurt and ice cream, you set yourself up for excess tissue acidosis and a serious health challenge, such as breast cancer for a woman, prostate cancer of a man or cystic fibrosis of the lungs for a child or young adult.”   One may argue that genetics have nothing to do with dietary or lifestyle choices, to which Dr. Young replies:  “The intelligence of the cell or its genetics is only as healthy as its environment.” Suggesting that genes are created by choices, not simply appearing out of nowhere, but have an origin in an environment where certain dietary factors, thoughts, habits, were repeated enough so as to alter the genes in their favor.

Immediately this causes one to think “is this doctor suggesting the parents are to blame for a child with CF?”  Yes, and No.  Yes, in the way that our choices do indeed affect the way our cells replicate, mutate and pass on to future generations.  No, in that we are not taught this, in fact we are taught something of the reverse, leaving us as unintentional contributors to conditions in our posterity that we are only now becoming aware of.

This new science is called epigenetics and it is showing that the genetic expression of a cell can be turned on or turned off depending on changes in the cellular environment affected by lifestyle and dietary choice.  The expression of cellular genetics in producing excess mucous in the condition of CF can be stopped when you stop pulling the acidic lifestyle and dietary trigger.  The human cell is only as healthy as the fluids it is bathed in, just as a fish is only as healthy as the water it swims in.  Change the water and you will change the genetic expression.

This is a whole new way of thinking that must be looked at now in order to protect future generations and give the children of tomorrow the best chance of coming into this world void of certain disorders, disorders we are baffled by today and label ‘defects of nature’ not accepting that we may be able to change them by changing choices we make now.

Another brave writer posting on Healing Talks (who was equally abused for his views on CF) dared to say that genetics may be altered according to our own will and lifestyle contributions, and replied to his audience by saying:  “Certainly genes can help determine whether something in a seed grows to become a potato or a carrot or an apple tree. But other factors, lifetime care and surroundings, also come into play whether such living forms are whole and healthy or subject to disease and rot. The same can be true for our lives.”  As difficult and challenging to existing beliefs and even science this may seem, I agree completely.  Recent studies conducted at Mt. Sinai Medical Center in New York on longevity report that genetics only have about a 30% influence on how long we live, the other 70% is purely lifestyle choices.  Now some may argue that this study was not directed specifically at the genes of those with CF, though the information is still compelling.

For those who already suffer from CF, diet alterations may still add support to traditional treatments and even reduce the amount of medications one must take.  Dr. Young suggests, for example: “When you understand that the body needs to be maintained in an alkaline state in order to have sustainable energy, health, fitness and vitality, then everything you drink, everything you eat, every activity you engage in, even your thoughts, produce acidic waste products that affect the health, fitness and vitality of the blood, tissues, organs and glands.”  He is simply pointing out that negative thoughts can add acid to the system, while positive thoughts are alkaline.  Certain foods are acidic, certain foods are alkaline.   Here is an example of a helpful chart to determine which foods are more alkaline and which to eat in more moderation (acid-forming foods).

Acid-Alkaline-Chart

 

Dr. Young is not the only one teaching of the importance of ph balance in the body and its contribution to health and elimination of disease.  Dr. Nirvana, a California Natropathic doctor teaches and treats many patients based on the acid/alkaline theory and states how an acid environment contributes to many negative conditions in the body including the accumulation of fluids and impaired energy production.  Low ph in the body is most certainly a “contributing factor to all degenerative and autoimmune diseases”

Dr. Young reiterates:  “All degenerative conditions are caused by dietary, environmental and/or metabolic acids, such as in the symptomologies of osteoporosis, multiple sclerosis, ALL cancerous conditions, heart disease and all respiratory dis-eases, including cystic fibrosis.”

Current scientific research documents that food we eat has the potential to alter our genetic coding.  This information is so exciting to researchers as they confirm and reconfirm the idea that ‘you are what you eat (see study here) : ” the possibility of targeting beneficial gene regulatory processes or dysfunctional ones through specific food intake has enormous potential for the treatment of countless diseases.”

Herbs and Oils

In a previous article on cystic fibrosis there was mention made of various herbs and essential oils that could be used in order to support the lifestyle and health of sufferers.  These suggestions were never meant to be taken as single cures, but rather as measures one might consider in addition to their regular therapies until the time they might not find the need for medications and breathing support any more, as did Jenny Livingston with her essential oil regimen.

Her suggested treatment is the following:

Rub 3 drops each of FrankincenseCypressEucalyptus, and Melaleuca along with 10 drops of coconut or olive oil (as a carrier oil to make the blend go farther) on chest, throat and back. If possible, do so in the morning after showering and again at night before going to bed. After a week substitute this blend with Breathe Oil Blend for three days, then return to the blend mentioned above. These massages should act as an expectorant and help prevent airway infections.

Rub 2-4 drops each of OnGuard Oil Blend and Peppermint on the feet every morning.

Rub 2-3 drops of Breathe Oil Blend on the feet at night and cover with socks.

Diffuse10 drops each of Eucalyptus and Melaleuca nightly (throughout the entire night if possible).

Randomly diffuse Geranium or Breathe Oil Blend into the air.

For immediate relief, deeply inhale Breathe Oil Blend or a Eucalyptus and Melaleuca oil blend (about 5 or 6 drops each) by making a steam tent, adding drops to a bath, or in a shower with the drain plugged.

She finishes her suggestion by saying:

Another thing I like to do is take Oregano as a temporary dietary supplement when I get sick. The bottle suggests drinking one drop in 4oz of water or juice, but the oil is so strong that it burned my mouth too badly. I now take 4-5 drops in gelatin capsules about four times a day as soon as I start feeling a cold coming on, and I continue doing so until all cold symptoms have subsided. I’ve had two colds in the past four months (one of which was pretty nasty) and I was able to get over both of them before they made me sick enough to require a hospital admission - a huge accomplishment considering the run of bad health I’ve had this year.  Do I think that these oils are a miracle cure? Not at all. But, have I felt better since I started using them (in addition to all my regular treatments)? Without a doubt!
Jenny, though not having beat her dis-ease, has been able to support her symptoms greatly by using essential oils and herbs along side her normal treatments, sometimes even reducing the need for traditional means.  Other herbal therapies such as lobelia inflata and natural antibiotics and anti-inflammatories have also been successful for some wishing to reduce the acidic intake of regular chemical intervention.  One man, searching out treatments for cystic fibrosis came across Dr. Christopher’s old time lung clearing protocol utilizing his favorite herb, lobelia.  Here is his most famous story illustrating it’s powerful effects.  Though the story highlights asthma, this was not the only lung ailment this treatment was used for.
Several years ago I made a house call to a home where an old man was very ill with asthma. His sons called me over to treat him saying that he could hardly breathe because his lungs were filled up with fluids. He had great difficulty sleeping for more than a half hour at a time, the mucus discharge from his lungs made rest impossible. We gave him a cup of peppermint tea first and then a tablespoon of tincture of lobelia every ten minutes. After about an hour, the emetic effect of the lobelia started to work and the man vomited at least a cup of fluid from the lungs. He continued to vomit non-stop for about 15 minutes. There was yellow, green, and even black, sooty material expelled from his lungs. Now anyone throwing up with that frequency and intensity would have had a bruised abdominal region, but the peppermint tea before the lobelia prevented bruising. Once the excess phlegm was out, the man could rest peacefully for the first time in many years. We later advised the brothers to keep their dad on the mucusless diet and plenty of steam-distilled water (one ounce or more for each kilogram of body weight) and to use the herbal respiratory formula (Resp-Free).
 Others have found energy work, dance and even surfing to be incredible means to reduce symptoms and function more normally.  Carina Klemetz is one such CF success story.
Reiki and cystic fibrosis
Born with severe cystic fibrosis, Carina had a meager 14% of her lung capacity at 6 years old.  Over a twenty year period of incorporating Reiki (a Japanese healing system), neti pot usage, homeopathy and often times herbal alternatives to antibiotics, Carina was able to improve her lung capacity from 14%-101%.  She states:

While keeping with Reiki we also experimented adapting our diet in different ways. I had sporadic treatment sessions of many types… Of course I made sure to eat a balanced diet, with multiple vitamin supplements. Lysozyme and “Wobenzymal” (a compound of enzymatic action on bacteria) helped when I had trouble. Also Echinacea drops, which helped with infections when there were no antibiotics. More recently, I’ve been taking Echinacea+Goldenseal+Elderberry when my coughing gets worse, coupled with vitamin C – this generally stops the cycle before I get to the point of needing antibiotics. And if I get to take them (tablets, most usually), I’ve been adding pro-biotics to help my system recover.

I’ve been told chronic sinusitis is the rule in CF. I had some trouble with it until I started rinsing my nostrils with a “neti pot,” a device of Arabic origin that helps you rinse with warm, salty water. This cleanses very well, and I haven’t felt the influence of sinusitis since I started on it.

You can read more about Jenny’s story by clicking her image below.

Jenny's story

 

Surfing, Dance and Yoga

Others have found, as I mentioned, healing through various forms of activity that most would not think a CF person could do.  One of these is surfing.  From the Cystic Fibrosis and Surfing website: “Due to the marvelous discovery of surfing’s remedy towards cystic fibrosis, patients are able to enjoy their treatments. A daily dose of surfing treats the deadly disease of cystic fibrosis.”  Why would surfing help someone with CF?  According to studies on those who surf with CF they have discovered:  “The salt water inhaled while surfing replenished salt lost due to the defective CF gene.  It enters the body and acts as a lubricant to prevent mucus build up (Peck, 2006).  It also allows CF patients to breathe much easier.”  Calib Remington, originally from Chicago, moved to California to surf in order to help his cystic fibrosis “I now surf to live” he says.

Ryan Morisette is a teen with CF whose favorite quote is a Chinese proverb that says “Those who say it cannot be done shouldn’t interrupt the people doing it.” He says it reminds him of his own inner strength and innate healing power which keeps him dancing and inspiring others despite his serious condition which he has struggled with since he was two.  He says that rather than letting CF get him down, he is using dance to heal himself and inspire others that they are stronger than they think they are.  He is an uplifting example to those in his community both with and without cystic fibrosis.

“I dance because it’s some something that just comes naturally to me. When I’m choreographing, practising, or performing, I can escape into my own world. Suddenly, I don’t have to do physio, I don’t have to take pills, I don’t have to go to the hospital. Suddenly, I don’t have Cystic Fibrosis. It’s just me and the music. On stage or in the studio, people can see a side of me that is rarely shown.  It’s such a great feeling when you just shed that nervousness and just let the music move you.”

Studies involving yoga and cystic fibrosis have been underway for some time and are still in progress today.  Currently, the Children’s Hospital and Research Clinic in Minnesota, led by John McNamara, MD has reported benefits of yoga with children who have CF:  “Evaluating the effects of yoga on children with cystic fibrosis: pain, sleep, anxiety, and depression and explored the potential benefits of yoga for children with CF.  After participating in a six-week series of one-on-one yoga classes, 20 children ages 7 to 21 reported that they felt more relaxed, could breathe easier, and felt calmer after yoga class.

Another example of yoga being beneficial and even altering genetics was conducted through researchers at Benson-Henry Institute for Mind/Body Medicine at Massachusetts General Hospital and Beth Israel Deaconess Medical Center.  They trained 26 people in a meditation practice for 8 weeks who had no prior experience.  They were taught breathing, mantra and mind-stilling techniques and were given blood samples before and after the practice.  The results were astounding!  “All of the subjects’ blood samples revealed changes in gene expression following meditation.” For now, this does not suggest that the genes themselves change, only the expression of them, but this is just the beginning of tests being done on ancient practices that have been used in healing all over the world for centuries.

I will echo the voice of Nathan Batalion of Healing talks by saying – yes, it is scary to have your life feel determined by something you cannot see or touch, like genes. It is natural to rely on what feels like the wisdom of our medical community to assist us in finding answers that we ourselves don’t know. Doctors become the lifeline as do those who have walked the path of this illness before us. We must, however, recognize that modern medicine does not alone possess all the answers, otherwise chronic and debilitating illnesses such as cancer, diabetes, arthritis and the like would be healed. In his words: “Wouldn’t a successful healthcare system be decreasing our health costs and a failing system be near bankrupting our economy? Knowledge is not the same as wisdom Wisdom is knowing what knowledge to know, namely the knowledge that is vital rather than irrelevant or misguiding.

Overall, there are a myriad of possible supportive measures that those suffering from cystic fibrosis can use to assist them in relief.  Sometimes a transplant is necessary, especially in late stages with very little options left.  Hope can be found in this changing world as those who bravely face cystic fibrosis continue to raise their voice and join hands with both the alternative healing world and modern medicine to embrace possibilities for erasing this dis-ease forever.  It is with cheerful hearts and courageous spirits that those who have suffered and assisted others with this ailment rise up with positive attitudes knowing nothing is impossible when you don’t give up.  My hats off to you.  May you feel supported, lifted up and heard.

Written by: Stasia Bliss

Sources: Dance me Free; Cystic Fibrosis and Reiki; Dr Nirvana Acid/Alkaline diet; Livingston Essential oils treatment; CF and Surfing; Lobelia; Yoga and Children with CF; Oxbridgebiotech.com; Yoga Alters Genes; Cause and Cure for CF; Healing Talks

48 Responses to Cystic Fibrosis – A Brave World of Hope

  1. Mary escolme August 6, 2013 at 12:09 pm

    Just to let you know, my niece is now facing a transplant. . Not her fault nor the fault of her parents. You are a VILE woman.

    Reply
  2. foleyg July 9, 2013 at 1:21 pm

    Your never as thick as when you’re too thick to know what you don’t know.

    Reply
  3. Julie June 25, 2013 at 3:56 pm

    So, you’ve replaced your CF patients shouldn’t seek Transplant article with CF patients are to blame for their disease progression because of their diet?? Why does the Guardian Express let you keep writing for them. If they’re paying you, boy are they getting ripped off!!! I wonder if they are aware of that. At least you didn’t use any CF patients pictures without permission this time.

    Reply
  4. Mona Albano June 23, 2013 at 4:23 pm

    This is a load of bollocks. Can someone please tell me how to block this site from ever again appearing on my computer?

    Reply
  5. Addy. June 22, 2013 at 7:23 pm

    it was once suggested that the parents (specifically the mother) of autistic children directly caused the disease through their behavior towards their children in infancy. this, thankfully, is now debunked.
    you’re not seriously suggesting the same thing here?

    Reply
  6. Kurtis RAder June 22, 2013 at 7:09 pm

    The best hope someone with CF has is to ignore the “advice” in this article and hope that family and friends who care about them also eschew the “advice” given by this author. They should instead consult actual experts who will provide guidance based on objective evidence rather than wish fulfillment.

    Ms. Livingston’s “essential oil regime” represents a desperate person trying to gain some control of their tragic situation by the equivalent of reading the entrails of a goat.

    Reply
  7. Cam June 22, 2013 at 12:28 pm

    Hi, I have CF, and this article was hilarious! So uninformed, my goodness. The defective CFTR carrier protein is genetically encoded for. Meaning, like my being born with brown skin, dark eyes and black hair, this is not something that can change. The severity of the genetic mutation is also encoded for. Some people have blocked CFTR pathways, and others completely are lacking in any pathway at all. I feel like the author doesn’t even know what the CFTR carrier protein does. Here’s a clue: it has to do with carrying salt in and out of the cells. So of COURSE using a neti pot, or surfing is going to help with CF. The lack of salt in the correct parts of our bodies is PRECISELY what causes the problem of sticky mucus, which we want to lubricate with salt water, and clear out through exercise and other airway clearance methods which are (gasp) surprisingly medication free. In fact, neti pots are PRESCRIBED by REAL DOCTORS (like, with MDs and medical licences, not the crazy quacks you’ve been talking to) because of what we know about the CFTR protein being a sodium chloride channel. However, This doesn’t mean that salt water and exercise and diet changes your genetics. That’s the dumbest thing I’ve ever heard.

    So, Stasia, what are you going to write an article about next? How mothers are giving their babies Down syndrome by not feeding them enough celery before the age of 3?

    Reply
  8. b chuck June 22, 2013 at 11:38 am

    Senior health and science editor? I hereby apply for the position of sport editor. I know almost nothing about any sport, and am perfectly capable of spouting nonsense on the subject, so I figure I’m well qualified.

    Reply
  9. Matt June 22, 2013 at 10:49 am

    Lady, do you not realize that the pH of your stomach is 1?

    Everything you eat, whether slightly acidic, neutral, or alkaline enters your small intestine as extremely acidic. It is then neutralized at the beginning of the intestine. Acid base chemistry is pretty goddamn simple. Unlike the field of epigenetics, which is much more complicated than you make it out to be.

    Not all Doctors deserve to be taken seriously, Young is a quack who should be summarily dismissed. People with cystic fibrosis don’t have functional CFTR. What you eat and how you “feel” can’t change that and can’t stop the ill effects caused by its aberration. After all, it exists in the cell in the first place because it has a physiological job to do.

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  10. Lucy June 22, 2013 at 10:34 am

    Thank you Stasia,

    Here you raise some excellent points and yes, diet is very important and it’s good that you talk about reducing acidity in such detail, which is crucial for CF. I recommend “The Mucusless Diet Healing System” by Arnold Ehret.

    To me, “hope is not dim.” How can it be? I have life. I am alive.

    I love CF because it’s me. I love CF because it has taught me so much and because my life is an immense healing journey. CF is a gift. Maybe this makes me an alchemist too?

    My life is not full of burdensome treatments – instead I cycle, I do yoga, I meditate and I heal.

    As someone with CF who felt your last article was both ground-breaking and informative, I am, however, disappointed that you have now taken it down. Yoga, meditation, Qigong and natural remedies have helped me much more than conventional treatment.

    When I first read Louise Hay’s beliefs about CF a few years ago, I found them uncomfortable but then I realised that they *were* the beliefs I had about my life.

    And I did wonder whether in some respects you had gone too far in regards to transplant but having heard about a child with CF who had been referred for a transplant and then following an alternative treatment programme, resumed a practically normal childhood, I don’t think you did.

    I also know of a women with a lung condition (not CF in this case) who had been on oxygen for six and a half years and needed a transplant. Qigong helped here came off the oxygen and all medication.

    When I read your second “Transplanted Beliefs” article, I was amazed at how articulate and measured it was in the face of so much hostility but most of all I, as a fellow journalist, was proud that you had stood by your beliefs.

    So, as I said, I am disappointed that you took the original article down, there are more and more of us who are treating our CF differently but maybe we don’t shout quite as loudly.

    I am also sad because not realising the article would only be available for a limited amount of time, I did not take note of everything you said and know that some of your suggestions, and some of your words, would have helped me.

    Would I have felt like this a few years ago? No, I would have been angry and cross that you had challenged my beliefs about my illness, at a time when I was very sick indeed.

    And now? Now I am healing, and with that comes a freedom I never thought I’d have.

    I am lucky.

    Reply
    • Matt June 22, 2013 at 11:01 am

      First of all, as someone with CF, I’d expect you to be aware that there are dozens of different possible CFTR mutations and a spectrum of disease severity in afflicted people.

      A healthy lifestyle certainly helps, but you still have CF. I’m glad you feel good, but it doesn’t change the fact that you have to live with this disease. You are lucky these methods are working for you, but they aren’t applicable to everybody.

      Both of Bliss’ articles peddle nonsense and misunderstanding. Suggesting that children in need of lung transplants should rub more oils into their skin and meditate is pretty goddamn unaware and arrogant. Following that up with more BS about epigenetics and diet acidity as the sole cause of disease is just jaw-dropping stupidity.

      Reply
    • Matt June 22, 2013 at 11:05 am

      PS

      Any real doctor would also tell you a healthy lifestyle including a good diet and exercise are paramount.

      Reply
  11. CatC June 21, 2013 at 12:25 pm

    I would like people to consider NOT LEAVING COMMENTS on this piece. The last thing we need is for writers to get the message that by causing pain to a community such as Cystic Fibrosis, that they can draw lots of attention.

    I know people are still angry, but if she doesn’t get it by now, she never will. If you feel the need to do something, please send a message to The Guardian.

    Reply
  12. Mary escolme June 20, 2013 at 7:29 pm

    See you are at it again with your spurious nonsense. You really are a despicable individual causing so much distress to sufferers and their families. Go and write about something you actually KNOW about like witchcraft and the like.

    Reply
  13. Grateful Lung Recipient June 20, 2013 at 7:04 pm

    I’m not sure what to make of an “article” (again, it’s an opinion piece, guys) that professes to apologize to and celebrate people yet continues to advance such misleadings claims as “CF can find its way into the new lungs” or “a condition he has suffered with since age 2.”

    CF is genetic — you are ALWAYS born with it. diagnosis can occur later in life, especially for those with milder mutations of the CFTR gene. These are documented, well-cataloged genetic differences amongst people with CF that lead to better or worse CFTR function. At any rate, one never “develops” cystic fibrosis. It is 100% present at BIRTH.

    Secondly, because the lungs have different genetic code, they will NEVER have cystic fibrosis. The stem cells in the lungs remain healthy, non-mutated cells. They create healthy, non-CF lung tissue — FOREVER. The causes of death for people with CF post-lung transplant are exactly the same as the causes for COPD deaths post-lung transplant: rejection and opportunistic infection due to immunosupression.

    Ms. Bliss, I am a fellow “oiler,” and I love them. I dislike your article because you took the community’s complaint about a lack of research and tried to sub in incomplete and misleading information in place of a void. Not helpful. And your apology is patronizing — surely you and all Guardian readers can see that. Your arogance is unwarranted, as your ideas are far from new or “revolutionary.” In fact, that’s how CF was treated a long time ago — when life expectancy was less than 10 years old. It is now 37, thanks to the medical and research-based Foundation that carries our disease’s name: The Cystic Fibrosis Foundation. And they, by the way, were also the ones who discovered the holistic powers of sea water and surfing. It is now a basic part of most Cfer’s daily routine, in the form of inhaled hypertonic saline.

    I wish you nothing but good help and happiness. I also wish you a long and successful writing career — which sadly, for you, means a crash course inr esearch and editing. STAT!

    Reply
  14. smash June 20, 2013 at 6:52 pm

    Ms. Bliss, Once again, as you managed to do in your previous unfounded article, Breathing Through Transplanted Beliefs, you discredit yourself with a blaring mistake in the second paragraph. Rewriting an article requires more than cutting and pasting from the previous. Or if you are cutting and pasting, then at least edit, proofread and have the paragraphs make sense. Why are you so insistent to discuss cystic fibrosis? It is obvious from your writing you have never know a person with cystic fibrosis in a significant way. I implore you to cease writing about cystic fibrosis.

    Reply
  15. CFMamaCFSister June 20, 2013 at 9:59 am

    You are the worlds most BLASTED IDIOT. You are just looking for this kind of attention. Did your parents “will” your sick disgusting personality upon you? Did they want you to be such an idiot who would go as far as to INSULT an entire community of close-knitted people? You have no idea what goes on in the life of a person with cystic fibrosis! This disease KILLED my sisters, is taking over my life as a mother of a 1 year old with the same disease. DO YOU REALLY THINK I WOULD WISH THIS UPON MY SON AFTER SEEING MY SISTERS SUFFER AS THEY DID? I really hope that you find a heart because maybe then you can realize the mistake that you as a person are. Im disgusted, horrified and pissed that you could do this. Go to hell, rot and burn. Stop posting this garbage. Nobody likes it, nor do they appreciate it.

    Reply
  16. Gemma June 20, 2013 at 9:21 am

    So if its because of what we eat and what our parents eat,how come everyone doesn’t have CF? I have a much healthier diet than most people I know and they seem to be perfectly healthy, weird that isn’t it?! Also more importantly, why do my two brothers not have CF? They have the same parents as me and were brought up eating the same foods, in the same household and did less exercise than me as they weren’t made to do it like I was. Please explain how this fits in to your theory.
    I don’t deny that a change of diet and exercise can help improve your CF slightly but it will not cure you and these factors do not cause CF, a thing called genetics does.

    Reply
  17. Iwona June 20, 2013 at 8:56 am

    Miss Bliss is like a spoilt toddler who doesn’t want to let go of a silly game. Appealing to her reason or higher feelings is pointless beause she has neither. She was asked to remove her first article because it contained unfounded and detrimental information. And what does she do? She reorganizes and expands the very same misinformation citing a charlatan as her major source. Really. Miss Bliss you should start taking responsibility for your behaviour instead of repeating it without end. As Rae Stephenson very wisely pointed out, you should write an informed piece on arrogance, impudence and swollen ego because you are a striking manifestation of all three.

    Reply
  18. CF Mom June 20, 2013 at 8:49 am

    You really just need to stop lady. One misinformed, idiotic article was enough. And the fact that you obviously saw the anger and resentment that you caused in people and families who actually have experience with CF… And then you turned around and wrote yet ANOTHER article taking it one step further… You are malicious. In some twisted way you are thriving off of the fact that you are deeply insulting a group of people. To even SUGGEST that I “willed” this disease onto my son. I am so utterly disgusted with you. Go to hell.

    Reply
  19. Iwona June 20, 2013 at 8:33 am

    You are absolutely right, Rae. Ms Bliss should write an informed piece on arrogance, impudence and swollen ego as she is a striking manifestation of all three. The reason why Miss Bliss was asked to remove her previous article was that it contained unfounded and detrimental information. From what I have read the very same misinformation has been nicely rewritten and expanded in the new article. The fact that the ‘sources’ contain ramblings of a charlatan as Amy and Tracy Matthews pointed out makes the whole matter a very sorrowful affair. Ms Bliss, you behave like a spoilt toddler who can’t let go of its silly game. Grow up and take responsibility for your actions instead of repeating them without end. You know guys, I find Ms Bliss totally ridiculous, I think appealing to her reason or higher feelings is pointless because she has neither.

    Reply
    • Rae Stephenson June 20, 2013 at 8:58 am

      Thanks Iwona, I have sent a request to the publication to retract this article, I think if enough of us did that surely they would have to? It really is irresponsible and dangerous. I lost my daughter, if only she was able to surf, what a stupid thing to say. As a previous comment mentioned we now have nebulisers with a saline solution to help break up mucous, we are doing everything that is proved. As as for induced violent vomiting, well, when Robyn was waiting for lungtransplant, she could hardly breathe (with ventilation) and violent vomiting would have done a LOT of harm. Anyway I know Im too emotional and cant verbalise my concerns very well, I just thank you all for doing it so succinctly. x

      Reply
      • Iwona June 20, 2013 at 11:01 am

        Rae, Of course I sent a request to remove another manifestation of Ms Bliss trash writing and undoubtedly others did too. I am not sure about the publication’s standpoint though. I have a feeling they enjoy the attention this despicable woman is getting. It is impossible not to get emotional in your situation Rae, so do not pay attention to what the blissful incarnation of ignorance has written. Anybody with elementary reasoning capabilities knows that induced vomiting would hurt end stage respiratory disease patient as it would hurt anybody in a delicate condition. All these suggestions are ramblings of a mentally unstable person with potential to hurt someone sick who would follow them. I suffer from another terminal interstitial lung disease, I have met CF patients on my way, mostly very young and very sick and I would like to shake the reason into this woman as I know she wrecks emotional havoc among people like you, who have lost their dearest to CF. She is so stupid she cannot imagine what it is to watch your child fade away and be unable to do anything because you have already done everything. If she had any connection to reality she wouldn’t be persistently producing this abominable rant. We will find a way to stop her inexplicable interest in profaning the situation of CF patients. I suggest she should tackle UFO in a long series of articles.

        Reply
        • CFdad June 20, 2013 at 9:37 pm

          I, too, sent a request to The Guardian requesting this repackaged garbage be removed. Additionally, I e-mailed a note and a link to every major media outlet describing incompetence of the author and highlighting the idiocy of her articles.

          Reply
  20. Abby June 20, 2013 at 8:07 am

    http://www.cff.org Go there!!! That is the source for the best and most current scientifically researched info on CF. NOT Miss Stasia Bliss.

    Reply
  21. CF Mutant June 20, 2013 at 8:04 am

    I think one of 2 things. Ms. Bliss either likes to stir up crap or she enjoys the negative attention, or both. By now, she should know the CF community’s collective feelings towards her. Let’s stop giving her that warped attention she craves, by not commenting, and hopefully she’ll go away.

    Reply
  22. Rae Stephenson June 20, 2013 at 7:35 am

    Well Im speachless, thought we have a sensible retraction of the glib unresearched sensationalist article, but nooo… we get the drivel repackaged. Miss Bliss, if, as you seem to think you are so “where its at” how come you cant open your mind and read all the scientific evidence in your replies, and acknowledge you know &*^% all about anything to do with this devasting illness? Do you honestly think if it was as SIMPLE as yoga and diet we would already have been doing this??? Especially for our children?
    Your next meditation should focus on your pride and perhaps ask forgiveness. Frommy viewpoint you are extremely arrogant.

    Reply
  23. Amy June 20, 2013 at 6:57 am

    We are encouraging Stasia to do her research. How about us? Here is a link to a discussion about Dr. Robert Young’s credentials. Just because he has the title “Dr.” doesn’t mean he has any medical training.
    http://www.quackwatch.com/11Ind/young3.html

    Reply
    • Tracy Matthews June 20, 2013 at 7:22 am

      Amy, there’s one line that really upset me. “In 1993, Dr. Young received a MS in nutrition from the American College in Birmingham, Alabama.” I’ve lived in Birmingham, Alabama since 1978, and I’ve never heard of American College. I even Bing searched it to make sure. And the rest of what I’ve read in what you posted about this man, he should be locked up and not allowed to make up his bull sh*t to mislead anyone else!! Who’s with me?!?!

      Reply
  24. Chloe - Proud PWCF! June 20, 2013 at 4:32 am

    You really just don’t get it. You need to seriously consider the way you word things. Put yourself in our shoes; think about how you would like to have these things said about you, how would you feel?

    First off – “For sufferers of CF, hope seems dim” – have you ever met a person with CF? Because I can honestly say I haven’t met such strong willed and positive people. Having CF doesn’t make us depressed, it makes us appreciate what life we do have, probably more so than any normal healthy Jo Blog. So trust me Stasia Bliss we are VERY hopefully. We have every right to be, as scientific knowledge is continuously growing, our lives are continuously improving.

    “Those who suffer from CF walk forward bravely into the hope of a new world of possibilities” – this is EXTREMELY melodramatic. One, like I said we already had hope and two, it is not a new world of possibilities, we are well aware of the various treatments available to us – natural and medical.

    “Many of them for the duration of ones life” – just for your information, for EVERYONE it is the duration of our lives, there is no cure, if you have CF you have it for life. “As of today, according to the medical world, there is no known permanent cure” – there is no cure. There is no semi-permanent cure, no half permanent cure, no cure for 50% of CFers, there just is no cure. This is the case for every “world”, not just in the medical field. There is no cure.

    But mainly, the whole “Acidic State may contribute” section – reflects back on your ignorance and the way you word things. CF is a genetic disorder; it is a deletion mutation, meaning that the CFTR does not work normally, as there is no gene (hence deletion mutation) to code for it. It doesn’t matter what you eat – you are born with CF in your DNA, you inherit this as an embryo, while you are in the womb, when you haven’t eaten or even taken your first breath. Yes, a healthy diet can improve anyone’s well being, but stating it is due to this diet that someone develops a GENETIC disease is just naive (to be kind).
    I read your resource and there are so many contradictory statements on there to what has been scientifically proven time and time again. For example he states to “never take antibiotics” and to put it bluntly, we would die if we did not take AB’s. Another example is the amount of foods he wants us to cut out could be dangerous, as we need a high in fat diet to stay healthy, due to a defect in the CFTR our pancreas doesn’t absorb the full nutrients from our food, which can cause malnutrition, then in turn making us more susceptible to infections. I’m guessing something that you never considered? And that is well known in the CF community, if only you had done a bit more research.
    Also not once did Robert Young’s state that he is suggesting that the parents are to blame for a child with CF, again you added that statement for impact, and again how on earth do you think parents are going to react? You’re just setting yourself up for ridicule.
    I then researched this Dr Young and it turns out that he isn’t even a doctor at all, he is an entrepreneurand an author, with no medical background or training, even his science degrees are from a college with no accreditation from any agency recognised by the U.S. Department of Education. He has also had various lawsuits surrounding his conduct in the medical community. So maybe you should have done a bit more research into the so-called “doctor” you are basing your claims on.

    I’m sorry but after that I stopped reading your article. But I see other people have disputed other parts of your article.

    In conclusion you are more than entitled to your own opinions and beliefs but you need realise that this is personal for us. So by publishing your alternative beliefs in a so called online newspaper and insinuating that with a change in diet or mindset we could cure ourselves of an incurable disease, that is extremely insulting to us as a community and you shouldn’t be surprised by our reaction or retaliation.

    Some of these things, which we are already aware of, are great to use in conjunction with our medical treatments but they are in no way a substitution for our various medicines and will in no way cure us of our genetic disease. So please, I’m asking you very politely, please STOP publishing about CF!!!!!!

    Reply
    • Rae Stephenson June 20, 2013 at 8:46 am

      Well voiced Chloe, much love xx

      Reply
    • Addy. June 20, 2013 at 9:18 pm

      thank you, Chloe.

      Reply
  25. CF Supporter June 20, 2013 at 1:36 am

    You’re an idiot. I don’t even know how the Guardian lets you stay and write this garbage. We should start a partition to have this nutcase end her uneducated writings. Has anyone written the administration about her? Something needs to be done because there are people suffering with this disease and you are making it sound like THEY waisting their time with modern medicine that is HELPING them and is extending lives that before would have ended prematurely.
    God damn will you just stop, Sarah? Is it that hard for you to take the hint that you don’t know what you are talking about and need to stop writing articles that basically slap CFers in the face?!

    Reply
  26. Tracy Matthews June 19, 2013 at 11:08 pm

    Those of us with children with Cystic Fibrosis are trying to make the disease better known and understood by those that don’t live with it day to day. I have 2 daughters with CF. The oldest will be 32 this August. I lost the younger one in February 2011 at the way too young age of 16. This is an ugly, monster of a disease that you are making a mockery of. You need to seriously learn about this monster, and not make it seem like it’s something that can be fixed by a change in diet. I really think you should just stop writing about something you will NEVER UNDERSTAND or COMPREHEND!!!

    Reply
    • Lisa Ritter June 19, 2013 at 11:21 pm

      I couldn’t agree more!

      Reply
  27. ThelmaCFmomto2 June 19, 2013 at 10:46 pm

    Same trash, you just sugar coated!!!!

    Reply
  28. DB June 19, 2013 at 10:45 pm

    I’m just going to address the things I like/dislike and what is true/not true in this article.

    1) “Not always, but sometimes, CF can find its way from the upper respiratory and digestive tract, back into new lungs”. No, it will NEVER find its way into new lungs. The sinuses may still culture bacteria and that bacteria could find it’s way to the lungs, but not CF.

    2) “‘When you choose or parents choose for their children to eat acidic foods or drink….you set yourself up for excess tissue acidosis and a serious health challenge, such as breast cancer for a woman, prostate cancer of a man or cystic fibrosis of the lungs for a child or young adult.’” So he is saying that my child’s genetic makeup changed when he was born? My son was excusively fed what babies have eaten for millennia, breastmilk, and he was diagnosed with CF at 3 weeks old. This proves his statement wrong.

    3)I have no qualms with using herbs/oils/etc. in addition, as a supplement to regular treatment, but “as measures one might consider in addition to their regular therapies until the time they might not find the need for medications and breathing support any more” is not applicable to CF unless there is an herb proven to completely re-fold protein within the cells, then restore function the chloride channel at the surface of cells, because this is what needs to happen in order for people with CF to ever consider completely stopping breathing treatments. Regular breathing treatments keep the thick sticky mucus (the product of these bad proteins and channels) thin and broken up.

    4) “Others have found, as I mentioned, healing through various forms of activity that most would not think a CF person could do.” Who are you polling that doesn’t think people with CF can do things like yoga, surfing, or dance? Exercise is not only great for everyone, exercise programs are being integrated into regular clinic visits for many with CF.

    5) ”The salt water inhaled while surfing replenished salt lost due to the defective CF gene. It enters the body and acts as a lubricant to prevent mucus build up (Peck, 2006). It also allows CF patients to breathe much easier.” You are so right! This phenomena was observed by pulmonologists treating CF patients in Australia and that is how hypertonic saline (7% saline solution that aerosolized through a nebulizer) became a part of medical treatment of CF.

    6)”For now, this does not suggest that the genes themselves change, only the expression of them”. You just proved my point, you can’t change the genes themselves, which is what CF is, part of your genes, not just an expression. Like I said in #3, CF affects a persons whole cell and being.

    I think you’re intentions are good, but I am extremely disappointed that you did not consult any medical professionals who treat actual CF patients so they could also weigh in. In my opinion, this article is biased, and that is because you did not present ALL options and data. Natural supplements and dietary changes can be helpful for some people, but the main reason people are living longer is largely due to the development of new antibiotics, inhaled medications, and a more consistent protocol followed by most CF clinics in the US.

    Reply
  29. CF Mama June 19, 2013 at 10:43 pm

    Please do us all a favor and leave the CF topic to those who know enough to write about it. Go back to gazing into the sun. I have no more time or energy for you. It’s obvious that you are enjoying the attention your first article received so now you want to backtrack and act like you learned something from us commenters. You still know nothing, as well as, some of your sited sources. This paper or whatever people call it, is a complete joke.

    Reply
  30. Stasia Bliss June 19, 2013 at 10:00 pm

    Apparently you did not read the article CF, for that I am truly sorry. Lots of thought and addition research along with well linked articles, medical studies and professional opinions are all included. I can see you feel better venting than reading and that is okay. I respect your opinion as well. Blessings to you and take care.

    Reply
    • Lisa Ritter June 19, 2013 at 11:04 pm

      You are a complete idiot!!! You have no clue what your lack of TRUE research can do!! Your disregard for the cf community astounds me!! I get that you felt the need to correct the first piece of trash that you wrote, but this is just as pointless and meaningless as the first!! The day that you actually spend time researching this one on one with a Cfer or their family or a doctor THAT ACTUALLY TREATS CF, not a moron like “Dr. Young”, who might as well have gotten his medical licenses out of a cracker jacks box, is the day that you can attempt to act like you know something about cf. Until then, keep your annoying, pointless, insane babbling out of OUR COMMUNITY!!! You are not welcomed here!! I’m tired of reading your nonsense!! Go back to your sun gazing and LEAVE US ALONE!!

      Reply
    • CFMama512 June 20, 2013 at 1:22 am

      Come live my life for a week and see why your article is so offensive!! I truly
      Hope you never have any children as your belief system would make it almost impossible to grow up well rounded!! I take very personally your suggestion that i in someway caused my sons CF. though i am not a moron (unlike you) i know i caused it by getting together with his dad.. Seeing as we are both carriers- that is THE ONLE blame i am willing to accept!! Have a lovely day dreaming of fluffy bunnies Ms Bliss

      Reply
    • Rae Stephenson June 20, 2013 at 7:44 am

      No Stasia, we reading your article completely, you dont seem to be understanding what you are saying? We saying: Dont meddle in things you know NOTHING about. You saying blah blah blah dangerous stuff! TAKE RESPONSIBILITY!

      Reply
    • CFdad June 20, 2013 at 9:57 pm

      I did not see http://www.CFF.org. Maybe you should check that out?

      Reply
  31. CFdad June 19, 2013 at 9:42 pm

    Really? Do you think adding a few facts and repackaging the same misguided, inappropriate, inaccurate, dangerous and harmful “suggestions” makes this article acceptable.

    The issue with your previous article and rambling/ defensive replies is valid research, accurate and measurable claims, knowledge of the topic and accountability.

    This article is the same garbage just wrapped up fancy. Either way it needs to go in the dumpster. Are you really this obtuse?

    Reply
    • Addy. June 19, 2013 at 10:27 pm

      yes. she is.

      Reply

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