It’s been one year since I started using Symdeko in July 2018. Symdeko is Vertex’s second-generation corrector/potentiator drug consisting of two drugs: ivacaftor and tezacaftor. I am a double deltaF508, so I’m the target population for this drug. I thought I should give you a little update on how I think it’s working for me. So here it goes!
I just wanted to post a quick reminder that not all plastics are safe to use. All plastics are derived from fossil fuels, thus may exude toxic chemicals that may be carcinogenic, neurotoxic, hematological, cytogenetic, or have other negative health impacts. And of course, all plastics are bad for the environment. Therefore, reduce your exposure to plastics whenever possible and instead choose glass, metal, or ceramic reusable containers and utensils. Always recycle. And make sure that no matter what plastic you use, avoid exposing it to high heat, such as in microwaves or in dishwashers.
More information on what the plastic numbers mean is here: www.babygreenthumb.com/p-122-safe-plastic-numbers-guide.aspx
More specific to CF, many brands of prescription pancreatic enzymes contain phthalates, a class of plasticizers that are known endocrine disruptors and can cause liver damage. I recommend avoiding enzymes containing phthalates, especially those who have liver issues. Pancreaze is a brand that does not contain phthalates. It's an outrage that phthalates are banned for use in toys and baby products, but not in pharmaceuticals! This must change!
When we have CF or any other condition with significant digestive involvement, bloating and indigestion are common nuisances. Fortunately, digestive complaints are nothing new to the human species, therefore the world's many herbal healing traditions have a huge amount of knowledge to contribute to this issue. Interestingly, digestion is one of the things that I feel conventional medicine has the hardest time understanding and helping with, especially for chronic digestive issues. So in this article I'd like to briefly mention a few herbs and techniques to use to address bloating and indigestion. There are so many herbs that help with digestive issues of all sorts and I couldn't possibly discuss all of them in one article, but I'll touch on a few that I use frequently for myself and my clients.
I love biscuits (that is, American biscuits), but since going gluten-free, and then Paleo, I've had to cut them out. Until now! As usual, I've experimented by combining a few recipes together and came up with a successful way to satisfy my love for the biscuit! I also have a variation for the egg-free people (I am one of those). I found that replacing the eggs with ground flax seeds actually makes them taste better.
Oh, and I call these Paleo(ish) because I usually make them with a little brown rice flour, but you can replace that with tapioca flour instead if you're being strict about it. This recipe is pretty quick and easy, and makes about 10 biscuits.
Now that the colder weather has come upon us in the northern hemisphere, it's time for viruses to make their rounds! Colds and flus can be pretty problematic for people with CF and other respiratory diseases as they can tax our immune systems and cause excessive mucus production, which can then lead to increased vulnerability to bacterial infections and exacerbations.
Although there are very few tools that conventional technomedicine has for fighting viruses like colds and flus, there are many, many medicinal herbs that have antiviral activity and many more that stimulate the immune system to fight the infections ourselves. In this article, I will discuss medicinal herbs and foods that can help us prevent viral infections and hasten our recovery when they do come.
This post is a continuation of my series focusing on individual herbs. In herbalism, we call in-depth documentation of individual herbs "monographs", and we call a compendium of monographs a "materia medica". My personal materia medica is over 300 pages long by now, so I'd like to provide some of the information I've gleaned about specific herbs that I think the CF community will greatly benefit from. So far we've covered astragalus and elecampane. Today I'd like to discuss one of the most revered medicinal herbs in Chinese Medicine: reishi mushroom.
In this article, originally published in AromaCulture Magazine in July, I discuss herbal and dietary support for CF children and adults. I discuss digestion, respiratory disease, liver support, and modulation of CFTR sodium chloride channels by natural means.
Cystic fibrosis is an autosomal recessive genetic disease that leads to the malfunctioning of several organ systems but most especially impacts the lungs, sinuses, and digestion. It is the most common autosomal recessive genetic disorder (meaning that each parent must be a carrier of the genetic mutation) in people of Western European decent. There are approximately 30,000 people living with cystic fibrosis (CF) in the United States, and more than 70,000 people worldwide.
I've been meaning to write a post about lung collapses for a few years now, and I guess I needed another one (lung collapse, that is) to encourage me to finally get it done. A lung collapse, or pneumothorax, is not uncommon in CFers with advanced lung disease. I've had several over the last four years and two surgeries to correct them. Here I will discuss what a pneumothorax is, what the causes are, what the common interventions are, and describe my experience of those interventions.
I'm sorry that I have been absent from activity on my website and blog in the last year or so. I wanted to give a quick update and explanation, and share a few thoughts that I've been having recently.
The following article is a guest post by Jackie Waters, owner of hyper-tidy.com and someone with personal experience overcoming chronic pain.
Chronic pain is defined as any pain that lasts over 6 months. Over 100 million people worldwide are suffering from chronic pain and if you are one of them, finding relief is your greatest concern. Many people jump to alleviate the symptoms of chronic pain through the use of prescription drugs. However, the repeated use of these pills can lead to an even bigger problem. Here are a few lifestyle changes and tips to help you minimize your chronic pain and restore your quality of life.
Mica is a clinical herbalist specializing in cystic fibrosis, severe respiratory diseases, nutrition and digestion, diabetes and blood sugar disregulation, and immune disregulation. Through their own personal experiences with chronic illness, they are passionate about empowering people to take charge of their own health with natural, holistic, and integrative approaches. Please ask questions or share what's worked for you!
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