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PCD Smiles 

PCD Smiles is a non-profit organization, funded primarily through donations.

Our mission is to bring Smiles to hospitalized PCD patients and or those PCD patients who have recently returned home from a hospitalization through the gift of Cheer Packages no matter their age.

To request a Cheer Package for you or your hospitalized PCDer, please visit our "Request Cheer Package" link and fill out our secure form.

If you would like to donate items to PCD Smiles's Cheer Packages, please visit our "Donations" page.

 

We have several ways that you can donate to PCD Smiles;

Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

Or; for more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't” policies at; http://pcdsmiles.com/support-pcdsmiles/donations2

Or; to sponsor a PCD Smiles Cheer-box today!
https://shop.pcdstyle.com/index.php?id_category=14&controller=category

Or; to get your “Official” turtle care ribbon gear today!
https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles #PCDstyle #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove 

#PCDawareness to help find a #cure4PCD!

 

 

 

Featured Articles

Order Your PCD Smiles’s 2020 PCD Awareness Shirts

Extra, extra, read all about it! PCD Smiles’s, limited edition, PCD awareness month 2020 shirts are now available for purchase at Smile E. Cove today. These limited editions will disappear New Year’s Day! Order yours today!

Visit our shop for your 2020 merchandise and more.

PCD awareness month 2020 shirts Can be found at, click here

Or at,
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Proceeds benefit the PCD Smiles program!!! 

 

We have several ways that you can donate to PCD Smiles;

Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

Or; for more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

Or; to sponsor a PCD Smiles Cheer-box today!
https://shop.pcdstyle.com/index.php?id_category=14&controller=category

Or; to get your “Official” turtle care ribbon gear today!

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles #PCDstyle #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #PCDawarenessMonth2020  #PCDartistProject

#PCDawareness to help find a #cure4PCD!

 

 

No Magic Bullet; Primary Ciliary Dyskinesia & COVID-19 in North America

      The United States PCD Foundation held its very first town hall meeting on 30 March, 2020 with one hundred and sixty nine attendees from the PCD patient groups. The virtual town hall panel consisted of North American primary ciliary dyskinesia experts Dr. Adam Shapiro of the Montreal Children’s Hospital, Montreal, Quebec Canada; Dr. Amjad Horani of the St. Louis Children’s Hospital, St. Louis, Missouri; Dr. Pamela McShane of the University of Texas Health Science Center, Tyler, Texas; and Anne Griffiths of the Children’s Minnesota, Minneapolis, Minnesota. The major theme of this virtual event was COVID-19 in the context of the PCD patient. The overall consensus of the panel was that the safest place for PCD patients and their immediate families is in their homes, unless the PCD patient needs respiratory support.

      The virtual town hall got off to a start with introductions of the town hall panel members, who then took turns answering questions submitted by patients and their family members via the Zoom teleconference platform. There was a brief overview of the COVID-19 infection and its possible implications to the PCD population. To date there isn’t enough data that would indicate the potential of COVID-19 complications to the patient with PCD. The lung damage being seen post COVID-19 infection in recovered patients appears to be fibrosis like damage from the distinct type of pneumonia being seen with COVID-19 infections. Whether this will translate to lasting impact on post COVID-19 patients and their FEV1 scores remains to been seen. So far there are no known reported cases of COVID-19 in a patient with primary ciliary dyskinesia in North America today. To the panel’s knowledge this is true for Europe as well. The panel consensus was that this might be a good sign, but honestly there just isn’t enough relevant data at this point.

      When pressed for recommendations for the PCD community, all panelists were in agreement that the patients need to limit contact until this event (pandemic) is over. Patients and their immediate family members should shelter in place for at least the next four weeks, with no one in or out of the home. If someone has to go for essentials, they should deliver essentials to the porch, clean and disinfect them, shower and change clothes, while washing the clothes they wore out. Patients and their families should avoid drinking and eating after one another. As well as avoid takeaway/take out and food not prepared inside the bubble of their own home. Take out poses a risk of infection from the food service industry employees and those that the employees comes into contact with. Patients and their families should severely limit the number of people who come and go from the home to virtually no one, including non-essential nursing services provided to the home. Stay in your bubble, stay in your homes, for at least the month of April and even the month of May. June and the months beyond June will have to be determined based on how the coronavirus ultimately unfolds in North America. Even once the peak of the virus has passed and various areas of North America start to lift their shelter in place orders, the PCD community will need to be very vigilant for at least the next twelve months or more. Prepare for things to stretch on and the possibility that the PCD community will be impacted by COVID-19 much longer than the general population. Remember there is no magic bullet for this. Well the magic bullet is actually to STAY HOME.

      If your PCD family includes essential employees that must work, care must be taken to protect the PCD family member, including isolating them from others in the home. If the family member works in health care, that family member should not be performing duties that involve direct patient care. Performing clerical work from home instead is the best alternative for these families. PCD patients who work in the medical field should be working from home where possible or just not working. Families are encouraged to talk to their PCD care providers to obtain letters for employers to get work accommodations and or assistance.

      The topic of shared parenting was brought up, and the general consensus was to limit travel between households for PCD children at this time. Shared parenting households are encouraged to work together to find solutions to limit their child’s exposure to as few people as possible. Keep their bubble small. This doesn’t mean that children should be kept from their other parent. But it does encourage parents to work together and find beneficial solutions to limit their child’s exposure to others. In researching this topic briefly, we’ve seen that this topic has been at the heart of several emergency court hearings. Even though most courts are currently closed or operating on emergent basis, court officers are holding virtual hearings to help parents navigate this unprecedented time. There are currently no States in the US who are granting a suspension of visitation rights solely because one parent is an essential employee or healthcare worker. The courts are suggesting that parents work together to limit an at risk child’s exposure to other people in the best interest of the child. And that the parent retaining custody in a shelter in place or quarantine situation makes extra effort to allow telecommunications with the other parent as often as necessary, and that after the limitations are lifted to grant extra visitations on a case by case basis. Parents in the above described situations should make every effort to work with one another and each other's attorney as needed.

      PCD patients are encouraged to continue all their therapies and not to discontinue anything or add anything without speaking directly to their care team. The panel members encouraged patients to keep up with their sleeping, eating, and exercising habits. This gives the PCD patient a good overall pulmonary edge or stamina if the PCD patient was to contract COVID-19. Patients should cough into a tissue, then bin it (throw it in the trash), and wash their hands. Each member of the panel said continuous hand washing is a must. Wipe down all surfaces, handles, and regularly clean the bathroom. There is indication that an infected person can shed the virus though their stool for a month or more. Sharing a bathroom with a suspected COVID-19 patient is not an option. Even people with mild illness can spread COVID-19 for many weeks. The panelist also said lightly wiping down delivered packages would be a good idea as well; although being overly obsessive about it is not necessary. PCD patients should treat all symptom flares as a PCD flare until the symptoms are proven otherwise.

      PCD patients are encouraged to keep their stamina up and to stick with low risk activities. Now is not the time to end up in an emergency room with a broken limb. The emergency room is the last place a person with PCD needs to be right now. PCD patients should utilize all their protocols at home as much as possible. If your treatment protocols at home are not working contact your PCD team. It is important to note that any aerosolized treatment option can spread COVID-19 through the air if the patient receiving the aerosolized treatment is infected with COVID-19. It is for this very reason that almost no emergency room in North American is currently giving breathing treatments in the emergency rooms. Emergency rooms have switched to inhalers instead. COVID-19 patients are being treated, where possible, in zero pressurized rooms at facilities across North America. Individual facilities are working hard to come up with ways to give patients breathing treatments in their own facilities while at the same time protecting all other patients and medical personnel. If a PCD patient ends up hospitalized for non COVID-19 issues, their access to breathing treatments will most certainly be impacted. Stay home, your treatments are at home. This issue with aerosolization and COVID-19 will shape the way facilities handle breathing treatments, CPAP usage, BIPAP usage, and ventilator usage for the foreseeable future. Stay at home in your bubble, it is the safest place for a patient with primary ciliary dyskinesia. We are in this for the long haul North America.

We have several ways that you can donate to PCD Smiles;

Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

Or; for more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; http://pcdsmiles.com/support-pcdsmiles/donations2

Or; to sponsor a PCD Smiles Cheer-box today!
https://shop.pcdstyle.com/index.php?id_category=14&controller=category

Or; to get your “Official” turtle care ribbon gear today!
https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles #PCDstyle #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove 

#PCDawareness to help find a #cure4PCD!

 

What’s in Your Hospital Go-Bag?

      From their very first breath of life primary ciliary dyskinesia (PCD) patients begin their life long battle against bacteria and debris that they breathe in. The lungs are perhaps the most environmentally exposed internal organ in our bodies. As a PCD patient ages the bacteria that causes infection mutates and becomes harder and harder to treat. This physiopathological progression leads to numerous hospitalizations to treat infections and stabilize patients with PCD with aggressive airway clearance and intravenous antibiotics. Oftentimes these hospitalizations come without warning during a normal pulmonary followup or following an acute onset of exacerbation symptoms.

      In my personal experience with my PCD there is a very real need to have your bags packed and ready to go on a moments notice with life necessities packed way inside them. I most always have my “Go-Bag” ready and waiting. I routinely rotate items in and out of my bags to keep things fresh and updated. My go-bags take the stress of unexpected hospitalizations off of me and off of my Mister. He doesn’t have to worry about rushing home to throw together items I might need, or think that I will need for my hospital stay. I also don’t have to worry about figuring out how to get my things if I'm hospitalized. Nor is there any last minute dash home to retrieve my things, myself, before reporting to the hospital admissions office. Go-bags are a great tool to help relieve some of the chaos in my PCD life.

      As I’ve gotten older into my forties and my bacteria has mutated to near antibiotic resistant. My medications have changed to harder to get medications, and Ive even had a port-a-cath placed for IV access. These harder to get medications may not be available at your hospital. And if you are like me my port isn’t a power port-a-cath, since it’s main use is antibiotic therapy. Believe it or not hospitals do not routinely carry non-power port-a-cath needles for port access. I always carry extra port needles in a small zipper pouch, in my purse, at all times for emergencies.

      Another issue for aging PCD patients is our use of non-mainstay inhaled antibiotics for our breathing treatments. Last year I had a surgical procedure and was admitted post procedure due to post operative respiratory distress to a major metropolitan hospital, in the Twin Cities in Minnesota. Very much to my surprise their hospital pharmacist asked my Mister to return home to retrieve my home supply of Colistin, because the hospital pharmacy didn’t have access to get any for my breathing treatments. I also have a ton of medication allergies because not only was I gifted with PCD from my folks; but my mother’s sulfa, sulfate, and sulphites allergy was passed on to me. That leaves a ton of allergies to medications in pill form. Something I can’t take orally in pill form due to anaphylaxis, can be given intravenously in liquid form without the preservatives often found in pills that I am allergic to. Upon hospitalization routinely I am hit with, “We don’t have your exact medication, but here is this and it has the same active ingredients. So it will work the same.” Ummm, in my situation it’s just not the active ingredients that send me into anaphylaxis it’s the inactive ingredients as well. So it is not uncommon for me to have to bring my inhalers or mediations that I know the hospital is not going to have. Then there is airway clearance with breathing treatments at the hospital, so I take my own vest garment for maximum comfort. I do not take the air generator part of my vest system though, you know the actual machine; actually my home hospital frowns on taking your machine portion in to their facility due to their cross contamination policies.

      Other areas to consider when deciding your essentials for your bag are entertainment, snacks, and drinks. PCD patients are often faced with contact isolation restrictions while hospitalized due to the poor understanding of cross contamination of bacteria risks. And then like my situation, now I consistently culture antibiotic resistant bacteria, so I’m always in isolation. I need things to keep busy, and I know what I like, but it is hard when being inpatient to go out and retrieve things to keep me busy. I’ve had nine day inpatient stays where I never even flipped on the hospital television, thanks in part to my iTunes library on my iPad. Do not forget to pack your devices’ power cords. An extension cord, or two, as well as a power strip might be a good addition to your bag. My current home hospital recently instituted a sugar ban on all hospital food services; no sugary drinks of any kind. Try getting a juice from your unit nurse when your sugar is low, from your lack of desire to eat due to being acutely sick. It is a nightmare! Now I pack my own drinks and snacks. Snacks because let’s face it, a slice of cheese and a pack of two saltines when you are hungry outside of normal room service hours is a pain. And if you like coffee, don’t forget your own sugar packets and cream; good luck finding those too. I've been known to sneak over to the Starbucks on my hospital campus a time or two while dragging an IV pole along behind me. And to pull off that kind of visit to the local Starbucks, I'm obviously not in a hospital gown and slippers either. Nope, I pack my own lounge clothes and pajamas. They are the first thing that I change into out of my street clothes on admission. You can virtually wear your own clothes while in patient and even for most procedures as determined by your attending physician/hospitalist/floor doctor. I even wore my own lounge clothes into my last port placement procedure. The interventional radiologist who placed my port said as long as I was comfortable, he was fine with no hospital gown. You will find a lot of places work with you, and if you don't ask, they don’t bother unless it strictly goes against hospital policy.

      It is because of the aforementioned things that I now actually have multiple go-bags for the hospital; one for is my actual go-bag with the basic essentials to get me through those first days, one is a medical go-bag with a my medicine, vest garment, port care needs, one is a craft/entertainment/snack/drink go-bag, and one is a long haul go-bag to get me through those long hospital admissions. Ultimately the number of go-bags that you need really depends on your personal preferences, however you should have at least one go bag packed and ready with your essentials for a short stay at all times. It would be a great habit to get into, just throwing that go-bag in your trunk on your way out the door for all clinic visits.

      Recently I asked my PCD community the following question, “What do you think is essential for your hospital go-bag?” Here are their answers; names have been omitted to protect patient privacy. Some closely related responses may have not been included.

- Cell phone charger and hair ties!!!!!

- Kindle for me ♥️ cosy slippers or slipper socks, dry shampoo.

- In all seriousness, we actually take our vest. Our hospital only had wraps and my PCDr is autistic to boot. Anything we can keep familiar the better. And he loves HIS vest. 🙂

- Vest, pajamas, clean underwear, and his computer and phone.

- Mine brings his stuffy. 100% of the time. And Hogwarts blanket.

- For my 17yr old, vest- Pillowcase from home, loose comfy sweats, slides, chargers, Chap stick & crossword books!

- Cell phone and charger, underwear, toothbrush and paste, brush, blow dryer, slippers, housecoat, book, shampoos and that kind of stuff (I don’t want to pay for theirs.)

- PJs, blankets, snacks, cellphone and charger, deodorant, toothbrush. That's what's essential for me.

- For our 7 year snacks are a huge thing! I make sure to pack granola bars, apple sauces, usually Goldfish crackers & Bear Paws. My son is always always hungry & so tiny. The meals usually provided by the hospital are totally insufficient. Other than that we bring his backpack with iPad, charger, favorite stuffy & blankie & a book.

- Favorite blanket, pillow, pj's, phone, laptop, earbuds, chargers, extension cords for chargers, lotion, (bathroom items), chapstick, cute socks, colored pencils, coloring book, favorite insulated cup, candy, chips, favorite snacks, favorite stuffed animal.... menus to order food from restaurants.

- So we don’t we bring a ton...

But a must is vest, slippers, blanket, pillow, and extra underwear. (Since my son is younger he’s been through a few pair of undies with antibiotics... and it’s not pretty). Sometimes it’s nice to have snacks in my purse. But the most are above.

The hospital we typically stay at tend to provide a lot of the distractions for us.

- My daughter always has her PCD blanket, fuzzy socks (the best), Aloe vera kleenexes for that sore nose. hand sanitizer, a cuddly, doesnt matter your age! Snacks essential oh and music.

- Their own pjs. Favorite stuffed animals, snacks, and their phone of course.

- Chargers and cords! Pens and a small notebook. Contact lists of important friends/family just in case you need to have someone else make a call for you. A cozy blanket for the parents it is always cold overnight!

- Snacks and the Xbox are how we survive extended hospital stays. I also second slippers!

- Underwear

- Ok so most people would classify this as essential but for me it is. About 14 years ago when I was initially diagnosed and I lost my lung, my little brother bought me a teddy bear. I was in the ICU at that time and he was too young to come into the ward. We have always been super close. This was his way of being there for me. This bear has since then gone with me to hospital with me every time and reminds me that no matter how bad things get I am never alone. Phone charger

- A book!! Always a book! Or if you're not a big reader, some kind of portable entertainment

- For me, nail polish. When I'm super sick, I don't care about my nails. But as soon as I start feeling a little bit better, painting my nails cheers me up and makes me feel a little less gross, since I inevitably have greasy hair and limited shower access... So, whatever your thing is that makes you feel put together and happy.  Look better, feel better.

- Also, your go to comfort food.  I make sure I've got a variety of snacks to satisfy whatever I'm craving.  I even take my own tea bags so I have unlimited herbal tea. 

- Slippers or flip flops that you can easily put on when you get out of bed and not step on the hospital floor. 

- I also hate wearing a hospital gown and will always just wear pajamas or comfortable workout clothes unless I absolutely have to wear a gown for a procedure.  I pack tank tops (easy to put on with a picc line) and zip up hoodies/ sweaters that have oversized sleeves I can easily put on over an IV or picc line.  Layers because I constantly get hot, cold, hot, cold from the medications (and/or fevers). 

- That’s such a good question. Comfortable pj's  for if chilly or hot and good book is a must for me.  Oh and some biscuits.  Oh and nice smelling soap.  I bet I think of more later lol.

- phone charger!

- I always take my own comfy clothes-leggings, pjs, layer type shirts for the temp changes and easy telly/iv line use, slippers/fuzzy socks, coloring books, word finds, iPad with movies, music, and books, ear buds, and chargers. My own cozy blanket, window clings for feel of home. And I always have my normal shower routine stuff (good lotion and body wash, make up too!) Because toward the end of hospitalization it's a good sign if I tried more. 🤣🤣🤣 I always take sanitizer wipes and baby wipes. Mints for when I am nauseous. I'm sure I'll think of more.

- Extra-long phone charger, eye mask for sleeping with too many lights on, and spares of any medical bits that the hospital isn't likely to have. And a one-page summary of my meds and recent medical history so I don't have to recite it over and over again when I'm short of breath :)

- Headphones, phone charger. Maybe the notebook. Clothes and my glasses but i barely put them off

- Comfy pjs, your own pillow and fuzzy blanket, things to keep you busy (I go crazy when stuck in bed). Take your own vest if you have one it will save $$ off of your hospital bill.  Snacks and drinks because hospital food is awful.

- Yes- chocolate!  I'm very lucky, my visitors usually ask if they can pick up anything for me to eat on their way to the hospital.  Usually tacos or skittles.  :D

- Note pad and pens, lotion (so dry and all the hand washing) word search or crossword puzzle books, an uplifting quote, warm socks....

- Slippers! I always bring slippers

- I always load plenty of films and box sets on my iPad. I always wear clothes never in PJ’s only to sleep.

- Nice hand wash, speaker as in my own room and gives my ears a break. My favorite

- hot chocolate books I never get round to reading (who am I kidding)!!!😊

- My tablet, My pillow (I wish,I don't take it cause of germs) hate hospital pillows and because of all the coughing, my own pads the hospital ones suck.

My husband, although it's hard getting him to fit in the bag. No joke my hub stays with me every night.

      Whatever your needs, we hope this gives you an idea on items to tuck into your go-bag to take away one more item of stress from living the PCD life. Remember that needs change over time, and some items do not handle longterm storage in your go-bag. Other things are just not practical to always keep in your go-bag, so create a list of missing items for quick reference during the rush to pack for a hospitalization. Stay safe and “Turtle On” my PCD peeps!

We have several ways that you can donate to PCD Smiles;

Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

Or; for more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; http://pcdsmiles.com/support-pcdsmiles/donations2

Or; to sponsor a PCD Smiles Cheer-box today!
https://shop.pcdstyle.com/index.php?id_category=14&controller=category

Or; to get your “Official” turtle care ribbon gear today!
https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles #PCDstyle #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove 

#PCDawareness to help find a #cure4PCD!

 

  

PCD Awareness; a Patient’s Perspective

    PCD (primary ciliary dyskinesia) awareness is an essential part of finding a cure for PCD. Awareness is also a difficult topic in the world of PCD. How do we raise awareness without showing our weaknesses as patients? Do we really want the world to know what we go through? How do I share my family member’s PCD and protect their privacy? Is spreading awareness about PCD necessary, or is it attention seeking? And finally why is PCD awareness so essential in finding a cure for those with PCD? Let us start by examining these aforementioned questions.

    So how do we raise awareness without showing our weaknesses as patients? You know the old saying that “Beauty is in the eye of the beholder”, who’s to say the same thing can’t be said about weakness as well. When we share our PCD stories, concerns, frustrations, or our PCD path in general it is not weakness to share the good and the bad. Actually it takes real courage to show others our vulnerabilities, our fears, and our trails right alongside of our triumphs. Sometimes our greatest strength is actually our own perceived weaknesses. So share your weaknesses right along side of your triumphs and embrace your journey with PCD, because the person you may help might just be the person behind you on the PCD path.

    And do we as patients really want the world to know what we go through? This is a question that I ask myself every single time I decide to share something about my journey with PCD on social media. Everywhere I look there are always these nice rosy stories about PCD triumph and virtually no stories on the lows of PCD. In fact google the question, “Will PCD kill me?” You will find all these nice neat packages and quips about how a person can live a rosy long life with PCD just like the normal population. There is always attached to said articles on the web, that this is true for patients with PCD as long as they were diagnosed early in life. This, in my opinion, is absolutely wrong. I was diagnosed at a very early age, treated at a very early age as well, and my PCD path has been filled with not so rosy details. However there seems to be the need to paint such rosy pictures of the PCD life, but it is anything but rosy to those of us in trenches. Awhile ago, while doing some researching, I ran past a presentation given on PCD in association with a PCD Foundation meeting that said that the median life expectancy in PCD was just forty-six. Forty-six years of age, and that was a presentation given around 2006 if I remember correctly. Based on that revelation I then went in search of what researchers believe the current average life expectancy in PCD is in the year 2019 and the number that I came up with from an anonymous source places the current average life expectancy at just sixty-seven. My source doesn’t want to go on record at the present time. Part of the reason is that these numbers are just rough estimates based on incomplete data and anecdotal evidence only. There are several PCD patient registries being established and put together all over the world. Once the data from all of the accredited PCD Centers of Excellence are put into the registries the answers to some much sought after questions should emerge. These patient registries have the capability to change the PCD world in ways we can’t even begin to fathom right now. Our very understanding of PCD may change overnight. This new understanding of PCD can only happen by sharing everything; our complete PCD experience the good, the bad, and the ugly. We as patients have to be willing to share everything.

    You might be asking yourself how do I share my family member’s PCD and protect their privacy? In today’s age of social media this is a very tough question. I’m personally thankful that social media wasn’t around when I was a child. My family overshared everything. I wasn’t given the right to object until I was eighteen. Everyone knew everything, and I despised my family for it. In a way, this very issue continues to shape my relationship with my family to this very day. Bullying was a big thing back in my day too. I believed and still believe that if my family wouldn’t have freely told everyone on the planet, including perfect strangers on the sidewalk every tiny detail that my bullying experience would have been much different. I’m not just talking about educating my teachers and staff about my PCD. Yes teachers and direct care people need to know. However, they didn’t need the nitty gritty details of my experience. Like let’s say, my antibiotics where giving me a yeast infection. These adults who where told this, then freely talked about my yeast infection in front of my peers, my peers parents, other teachers, and so on. They really didn’t know when to stop, they really didn’t care about my privacy, and they never took my feelings in to consideration. I was just food for gossip with everyone. People really need to stop and take into consideration a minor child’s right to privacy. This is especially a big thing when dealing with a special needs child. They deserve privacy and the right to choose. So how do you share a family member’s journey with PCD? Ask them, run your idea or ideas for sharing by them and get their approval, and mostly involve them in your awareness efforts; because it’s their life and they will be the ones who have to deal with the fall out when they come of age.

    Is spreading awareness about PCD necessary, or is it attention seeking? I often get asked if I’m oversharing my PCD experience. Is my endgame attention seeking or is it really awareness? But here is the thing, yes it is a fine line between spreading awareness and attention seeking. The only way to create awareness is to seek out attention, but is it the right kind of attention. I don’t want sympathy, that is not why I share my PCD experience. I want people to know and understand the PCD experience so that they are better equipped to deal with their PCD loved one. And yes sometimes that loved one I am talking about is me, when the person reading my awareness postings is a family member or friend of mine. By helping others understand the PCD experience I hope to ease the burden of PCD on my fellow PCDers. If people do not know what we go through, then how do we expect them to help those of us with PCD. How do we expect them to care about the fact that cures for a rare diseases are most oftentimes funded by the friends and family members of those with the actual diseases. If they don’t know, if they don’t understand, and if they don’t care how are we ever going to find real treatments and ultimately a cure for primary ciliary dyskinesia?

    And finally, why is PCD awareness so essential in finding a cure for those with PCD? Well I think I’ve pretty much covered that in the last paragraph. Let me just add that besides helping advance research by helping with funding issues, we need to raise awareness so that other people actually hear the name; primary ciliary dyskinesia. PCD needs to become a household name, just like CF is, if we ever hope to find a cure; let alone fund a cure. We need to get medical students, medical researchers, and the pharmaceutical industry interested in PCD. We want to bust the myth that PCD is a mild disease that most grow out of; which is truly false by the way. But these medical and pharmaceutical people actually still believe these untrue things, because some old medical journal says these untrue things are true. These medical and pharmaceutical people aren’t interested in keeping up with the emerging data that is proving that PCD is anything BUT a mild disease. I had a friend go speak in front of a group of medical professionals at a medical conference a few years ago. The conference attendees where shocked to learn my fellow PCDer and friend required and received a double lung transplant due to PCD, because to their knowledge from school PCD rarely resulted in the need for a lung transplant. Well I can name a dozen PCDers who are post-double lung transplant and just over twenty PCDers who are currently either on the transplant list waiting their transplant, or are currently going through the transplant evaluation process before being listed for transplant.

    PCD awareness is an essential part of finding a cure for PCD, because PCD is so widely mischaracterized in severity and outcomes. We need to raise awareness to raise the funds to actually help ease the burden of PCD on not only myself, but my fellow PCDers as well. How do we raise awareness effectively and safely? We accomplish this by keeping the name PCD or primary ciliary dyskinesia out there and in everyone’s faces. We want interest in PCD not only in the medical and pharmaceutical industry, but in the insurance industry and in the everyday world. Keep spreading PCD awareness people! Tell your truth! Help us find and fund a cure for primary ciliary dyskinesia.

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Things People with PCD & their Caregivers Wish they would be Asked

Back in 2018 for Rare Disease Day we asked the PCD (primary ciliary dyskinesia) Community to tell us the things that they wished people wouldn’t say to them. That whole discussion within the PCD community lead to us to ask for 2020’s Rare Disease Day,

 

“What are some things that you wish people would say to PCD patients and their caregivers?”

Here are their responses. Some closely related responses may not have been included in this list.

- “I’m going to the grocery what can I pick up for you, or do you want to ride along?”

- “Can I come do your laundry for you?”

- “What can I make you for diner tomorrow night?”

- “How are you today?” - Just check on them.

- “Call me anytime for anything.” - And then be available.

- “Let me watch/sit with the kids/your PCDer so you can have a break.”

- “I’ll bring you a coffee to the hospital.”

- “How can I help raise awareness for PCD?”

- My number one wish; “How can I help you today?”

- “Can I help you carry something?”

- “Is there something I can do to make your day easier?”

- “I'm bringing you food so you don't have to worry about cooking for your family tonight!”

- “”Tell me about your disease!” - Don't stare or guess”

- “And #1 thing from some of my family... Say nothing! (Cause it's never positive)”

- “I'm disappointed that you don't feel up to doing XXX that we had planned for today.  Is there something else you would like to do instead?  Would you like me to come over and keep you company if you don't feel up to doing anything?”

- “As an PCD adult, these are my wishes:
       * “Can I pick up your prescriptions for you?”
       * “Show me how to sterilize/prepare your nebulizer/saline rinse and I’ll get it set up for you from now on (!)”
       * “What can I pick up while I’m at the store?”
       * “Please let me help wash the dishes, sweep the floor...”
       * “I’ll bring some prepared foods over that you can microwave.”
       * “I’ll give the dogs a walk.””
 
- “So basically, anything around the house - cleaning, laundry, cooking, running an errand. Is what I wished they’d ask me.”

- “A small but big thing - if someone asks if they can do something for me, I often say no, thank you (Pride, not wanting to seem weak).  When someone doesn’t ask but says ‘let me do this for you, I want to,’ I’m more likely to say yes.  Being helped is hard for me and I suspect hard for others too.”
 
- “I totally agree with the point about being helped is hard to accept.  For starters, even though I've lived in this body for 64 years, it's still hard to realize sometimes that I can no longer do everything every day.  Some days, it's a real accomplishment just to get dressed!  So it helps a lot if someone says, "Let me do it for you," or "Let me help."  I've finally been learning to accept when people just jump right in (out in public, total strangers!) to help me.  Brings tears to my eyes every time, and I always, ALWAYS say a heartfelt thank you, and also that I hope someone is there for THEM someday, if they ever need it.”

- “I got my flu shot! I had the kids use hand sanitizer before we came over. I cleaned the snow off your car.”

- “If you're feeling up to a visit, I would like to come hang out🤗”

- “I’m not feeling 100% today, but know we were supposed to hang out. Do you want to reschedule?”

- “I should preface this with how many people will get together with us and say, “Oh!  Don’t worry! We just have allergies, or the sniffles.” and we end up in the ER with pneumonia”

- “You are doing a great job advocating for your son. What can I bring to you at the hospital?”

- “How can I help keep your kids healthy when they are at my house?”

- “Do you want me to check in on your health proactively or wait for you to bring it up? What's your preferred way for me to stay updated on what's going on/how involved do you want me to be? What are you okay with me sharing with others we mutually know?”

- “I'm a mum "Do you need someone to talk with? Remember that keeping all your grief inside is not of any help, especially for your kid"”

- “It’s ok if you are not up to doing normals things, I get that you have bad and good days.”

- “I understand if you have to reschedule.. again”

- “Let’s me sit with you (or your child) while they do their treatments”

- “I know the medications, especially the steroids, change your temperament, is there something we can do to make today easier for you”

- “We are not feeling well, let’s reschedule so your PCDer won’t catch my cold- I know it’s a much bigger deal for them to get sick”

- “From my boss - I understand how much this affects you, take the time off to be with your child in hospital, we will sort out cover........ if only 😔🤞”

- “I'm a PCDer...if anyone wants to do my laundry let me know 😂😂”

- "Where can I donate money towards PCD research?"

- *When going to someone's house* "Is there anything I can do before your arrival?" ... no candles, plugins, fires, Febreze, strong scents, open windows on poor air quality days, etc...”

- “Can you tell me more about PCD? It sounds more complicated then just a runny nose.”

- “Understand we cannot always do all the same things you do. Try sometimes when planning to allow for activities that are all inclusive or understand that we are not being flakes but actually have legitimate reasoning  for not going.”

- “For my little PCDer I’d like people to ask

       * “Would you like to wipe your nose?” Or “is it ok if I wipe your nose?” Rather than accost them with tissues.
       * “Want to have a play date? Want to try again?”
       * “Can I hang out with you in the hospital? I’ll bring a phone charger...
       * “I’m available for a ride... I’ll pick up your other kid from school, they can hang out till you get home.”

- “Spot on with the I’m going to the store one. With my husband no less. I always ask him when I go. I finally said this year I wanted him to ask me EVERY time he goes.”

-“ You laundry one made me laugh. “Why yes, I’d love for you to come over and clean my entire house.” 🤪”

- “Do you want company running errands?”

- “Oh this got me teared up. My son was sick for 5 weeks prior to and after Christmas. I’m a single mom with a great group of friends and family and my sons father is wonderful...but nobody gets it. Any of these things would be amazing. ESP “can I pick you up anything?”, “Meds?”, “Or would you like a break for a couple hrs.” Makes me sad because it’s so simple but unless you have been there.....”

- “I can’t even imagine what this is like for you; I am your friend and I’m here to help - name a date in the next two weeks where I can give you a night off...or drop off a meal. - I won’t take no for an answer. XO”

- “Yes I know what PCD is and not be corrected with "Do you mean COPD?" 

- "You responses are great ones.  Just understand when I am tired I just need rest...not a lot of questions and advice I have been given a thousand times  before.”

We at PCD Smiles understands how hard it is for our fellow PCDers and their families to navigate the ups and downs of the PCD Life. Simple little acts of kindness every day can really go a long way to improve the life of your loved ones fighting PCD. Above all the best thing that you can do for the PCD family in your life is to ask what they need; never assume, and never tell them what they need. Oftentimes it just the simple need of an ear to vent to and a shoulder to lean on. Check on your PCD family today. You just never know what a blessing that may be to them.

Happy Rare Disease Day 2020! Are you wearing your blue jeans today? “Hope it’s in my genes!”

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