Char Magnifico for APFED

Sunday, January 15, 2012
By Louis Magnifico

Char Magnifico lives with Eosinophilic EsophagitusToday, Char Magnifico of The Traveling Twosome sends out an important message.  Please watch this video and share this link with all of your friends, family, and Facebook pals.

As active, wild, and fun as Char is on all of our videos and shows, you might be surprised to learn that she actually lives with a condition called Eosinophilic Esophagitis (EoE).  As her husband, I know first hand how frustrating this disorder can be for her as she faces each day with a new challenge.

You’ll be hearing us speak more about eosinophilic disorders as Char is taking on a spokesperson role for APFED (American Partnership for Eosinophilic Disorders).  Please check out their website at www.apfed.org to learn more about these chronic conditions.

Our new book, The Traveling Twosome: Live, Love, Laugh will also contain a chapter about Char’s battle with EoE.  It’s been Char’s toughest fight… and by far her most convincing display of her much hyped “girl power.”  She wants to encourage others with eosinophilic disorders to keep fighting and raise awareness of these conditions that have gone under-researched by our medical community.

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30 Responses to “Char Magnifico for APFED”

  1. Susan McArthur

    My 14 yr old daughter Samantha suffers from EoE and she currently has only one food in her diet and is formula and G tube for about a year now. Thank you so much for helping to raise awareness for this awful disease!!!!

    #11601
  2. Christina Leonard

    Thank you for sharing to help create support and awareness for Adults with EGIDs!!!

    #11602
  3. Bryson

    Is that you in the pics, Char?

    #11606
  4. Yes, Bryson. That is me. It’s not the Char you’re used to seeing, is it? *smile* This is only a small part of what I live with every day. Though these challenges are difficult I refuse to allow it to steal my JOY!

    #11608
  5. Christina, I pray daily that the doctors and researchers hear our plea and find better treatment for all those who suffer! It’s an honor to work with APFED and be a spokesperson for the Mid-South region. Helping those who suffer one step at a time. Take care and know you are not alone.

    #11609
  6. Susan, Please let your precious daughter know Louis and I will be praying for her. May all of our voices be heard so that we can get better treatment, and Lord Willing, find a cure! I know this is a difficult challenge but please encourage your precious gift Samantha to hold on to her Hopes and Dreams and never allow this horrific disease to steal her JOY. If she ever needs a boost of encouragement, send her my way! I would be more than delighted to encourage her!

    #11610
  7. Bryson

    I had no idea, Char! Is it painful?

    #11625
  8. It is quite painful. It hurts if you eat and hurts when you don’t eat. Many of us suffering from eosinophilic disorders also get distended stomachs, severe pain, nausea and vomiting and much more. I can tell what type of day I will have within the first 5 minutes of awakening. Nausea in the morning is the worst. It can take until lunch time to be able to eat anything without vomiting. The rash that I get begins with a flush of severe heat… my skin feels like it’s on fire. Then I get severe blotching redness, swelling and inability to breathe. It gets quite painful and scary. People have no idea because I choose to not allow EoE to take over my life. I want to be known for ME and not my disease. I have a friend who has a 2yo sweet precious little boy who suffers….. I am an adult and can tolerate the most challenging days but the little ones do not have the same ability and often have more severe cases ending on a feeding tube and formula. My hearts desire was to become a public spokesperson for the little ones and APFED has asked me to step up and do just that. It’s an honor and blessing to be able to help gain awareness and I am dedicated to helping APFED and all of us who suffer from these disorders.

    Though I suffer with EoE I shall continue to LIVE, LAUGH and LOVE ALWAYS. After all, it’s how I roll! *wink*

    #11627
  9. Eric Turlock

    Char you don’t let anything stand in your way, do you? You have a terrific attitude!

    #11650
  10. Thank you, Eric!! I pray it be so! I refuse to allow anything to steal my JOY and affect my life. I Live, Love and Laugh everyday! I have GIRL POWER! I MUST always represent! *grin* Thanks so much for your support and encouragement. I don’t allow pity-parties but I DO allow fun and adventure! So let’s get busy!! Time for some new fun to be shared! After all, we still have Olympics to finish! Today we will reveal the outcome of the Wii competitions! Stay tuned!

    #11659
  11. Eric Turlock

    🙂

    #11667
  12. Char is my favorite SUPER HERO !!!
    She can generate so many smiles in a room…
    she’ll give others JOY in all she does…
    And she is so devoted to her family,
    even they are amazed of all the energies she gives
    to each of them, her kids, her husband & her many wonderful fans!!!
    She Soars like non other …& when you meet her
    She’ll throw the power of JOY into your heart!

    #11703
  13. *sniff sniff…. wipes tears* Kevin, this has to be one the of nicest, most loving things anyone has ever said. Thank you. I pray your words be forever true! My heart is for others…. the way God intends for us to be. God Bless you, my friend.

    #11705
  14. Char, me & everyone here in Hot Springs are so proud of you for not letting this thing you live with take the focus away from all the great things you do and are 🙂 You def are someone I would be very proud of for my daughter to call and consider as a role model in her life, (which I pretty much think she does!) We love you and want you to know that you have friends & family here in Arkansas! Keep doing your thing because you are very talented and the love you have shines through in all you do. Sincerely, Dean

    #11730
  15. Dear Dean,

    Everyday I pray God continues to use me in ways I never could have imagined! He has certainly BLESSED me! I am SO THANKFUL!!

    Your loving note brought a warmth to my heart. You have become like a brother to me and we do consider you as part of our chosen family. Hot Springs has my heart completely! My second home! I love you all so very much! Neelah is an incredible young lady and I am honored to be a part of her life too. You have been an incredible encouragement and support. THANK YOU for being YOU and sharing your life with us! My home away from home is so inviting and full of love and laughter! The best part of everything is the relationships being built! We love you, Dean! We love you, Neelah! WE LOVE YOU HOT SPRINGS!

    #11758
  16. Mari

    Hi Char,

    Your attitude is truly inspiring. I was recently diagnosed with EoE and am having a hard timer adapting to my new life. I try to stay positive, but being unable to eat food an drink has made it very hard to socialize with my friends and I feel like my life is slipping away from me a bit. It is really great hearing that you are able to keep a joyful attitude through the disease, and I will try the same! I am curious–you mention “The rash that I get begins with a flush of severe heat… my skin feels like it’s on fire.” I have been having an itching burning face that becomes red eveyday for over a month now, and I also have some rashes on my body. I beleive that I have become allergic to all food (literally, as no matter what i put in my mouth–only a few types of grain and some dried fruit and baby formula at this point–makes my face burns and usually upsets my EoE). Is it possible the whole-body symptoms are from EoE? I know you are not a doctor but thought i would ask woman to woman! It is comforting to know others are going through something similar and staying strong and happy! Thanks so much!!

    #11965
  17. Dear Mari,

    Note: I am NOT a doctor. I haven’t even had a chance to play one on TV yet! *wink*

    First let me say how very sorry I am that you are also suffering from EoE. Those who do not suffer with it or have someone very close to them suffering with it have very little understanding. Fortunately for me, my husband is my best advocate. He is with me every step of the way and is always by my side speaking with my doctors at every visit, every flare and every phone call. I do hope and pray you have someone by your side. That support helps in so many ways!

    Secondly, I am sooooo glad you were diagnosed! It’s so much scarier and much more difficult to deal with all the symptoms with no known answer! This is first step to better health! Now that you have a diagnosis you can take the steps necessary to better understand your own challenges. It is never easy but medications do help reduce the symptoms. We have no specific meds for EoE yet in the medical world but we do have meds that can be taken to help alleviate the worst of the symptoms. If meds do not work well enough special formulas can be created and/or a feeding tube can provide proper nutrition. I know the latter is never preferred but some people have the best results with it and find they can have a much better quality of life. There is a great amount of information available at APFED.org. If you have not yet visited the site and become a member (it’s free) please do so. Also there are several Facebook pages set up for those of us with eosinophilic disorders. One specifically for adults as well. Please feel free to join us and ask questions, share struggles, and create friendships with other folks with these same life challenges. There are many incredible folks and the extra support brings a comfort to everyone involved.

    I do hope and pray you have an incredible team of specialists. I am based in the Memphis area and I must state I am very blessed to have an incredible team who all work together to keep me as healthy as possible. They cover all the bases and when strange issues arise they truly go above and beyond their calling. I love my doctors! They have given me back my life…even though I struggle everyday I am far better than I was when I first went in. My doctors have changed my life!

    My EoE is still a mystery in so many ways. We all laugh and say “I must be different! It’s how I *roll*”. LOL My body has an allergic reaction within itself that is unknown and we are all clueless. We laugh but it can become very serious. You saw just a little bit of the rash reaction on the APFED commercial. Reactions like these are serious and you need to be seen by a specialist to know how to act when these occur. I suggest doing what we did. It was the very best thing we could have done. We took video and we brought it to our doctors to see exactly what was so hard to express in words. The rash, the burning, the inability to deal with anything touching my skin, the swelling, the difficulty breathing …. my reactions get severe yet sometimes they can be fairly mild in comparison. We simply do not know what my triggers are and we do not know how severe each reaction may get so I must keep meds with me at all times. I am also super careful with what I eat when I am not near home.

    Do you have a team of doctors already? If not you need to do some research. APFED.org does have a list of doctors in many areas but obviously this list is not including every doctor who works with EoE. We are trying to get more doctors to sign up and let APFED know they work with eosinophilic disorders so patients can locate their information when searching for a specialist.

    As far as whole-body symptoms…. well, what I can say is that those who have eosinophilic disorders also have weakened immune systems and other issues can arise. This is why a team of specialists is often mentioned when speaking to someone like myself. An allergist can test you for foods and outdoor allergens as well animals. Combination reactions can occur but are more difficult to figure out and often you will have a time period where you write down everything in a health journal so you can see patterns. This is the stage I am at though I have failed miserably to log everything the last few weeks. My turn to step up and do better! I owe it to myself.

    Find a great allergist who will work with your doctor. Were you diagnosed by scope, blood work or both by a gastroenterologist?

    Please stay in touch and let me know how you are doing.

    God Bless and be well,

    Char~

    #12007
  18. Char,

    Thank you for sharing your story! My 2.5 year old suffers from EoE. Sometimes I feel like he will never get to live a normal life. It’s very encouraging to see someone like you, excelling despite the hurdles that EoE can put in your way!
    You are truly an inspiration!

    #12443
  19. Mari

    Hi Char!

    For some reason i didn’t get an email update and only just saw your message–thank you so much for your thoughtful response!! Very helpful!I am really happy to hear that there are support groups on Facebook. I am having a hard time finding the one that is for adults, do you know what it is called? It would be so nice to be part of a group of people to share stories and get and give advice.

    It is really great that you have found such a great team of doctors. I am actually really surprised you have found so many that are dedicated to helping you with your mystery condition–I have had the complete opposite experience, where each specialist i go to runs a blood test that is inconclusive, gives me a pill i have a reaction to,and then passes me to another specialist. I must have been to ten by now! I am so happy that you have found a team of curious and creative doctors that are willing to investigate and work with you through your ups and downs–that really helps to fight the good fight! Do you have an ideas where i could find a team like that? Did you go to a special center or research association? I am in DC, and have gone through the docs here, so am thinking of going to Johns Hopkins in MD. I also hear there is a great allergy research center at Boston University that sees mystery allergy people, have you heard of this or checked it out? I swear I would fly anywhere for the right doctors with some helpful answers! I did go see an EoE specialist I found on APFED, he gave me the formula that is keeping me going right now, but after i reacted to the few medications he tried, he told me he was out of ideas 🙁 I am trying to get into research studies at the national institute of health since i know there is a lot of research being done on EoE. Maybe one of these days they will find a cure and we can all feast! 🙂

    In answer to your question,I was diagnosed with an upper endoscopy procedure. They found the eosinophils in my upper esophagus. It feels like they are up so high i can literally feel my throat getting tight and lumpy. But i have had this condition for months with no symptoms, it was only after i got sick and my immune system flared up and started attacking all foods that my EoE became an issue. I wish there was just a way to quiet down my immune system! I have been keeping a food journal, but i havnt been logging other things like you said above. Maybe I should do that. I have noticed my throat is worse in the afternoons, but then i am usually able to eat again around 8 or 9, a bit of grain then some dried fruit later. I noticed on facebook that many people were eliminating all foods for months and then were able to add things back in, have you heard of this or tried it? I wonder if this would help?

    I am so happy for you that you have a wonderful husband by your side!! It is really great to have that support, especially on the worst of days when it is hard to stay positive. I do not have a husband, and it has actually become kind of hard to date since i have gotten sick, but i do have great friends and family. Hopefully I will be able to have a relationship despite the inability to go out for nice dinners and share bottles of wine. But maybe someday! Gotta have some hope right?! 🙂 Thanks sooo much again for your recommendations, it is so nice to have someone to talk to that is also going through this! I hope you are having a great week, and I am sure you are staying positive and joyful as always! 🙂

    #12491
  20. Dear Abby,

    I am so very sorry your 2.5yo is suffering from EoE. It is a very challenging condition to live with…especially unable to communicate as well as an older child/adult can. We will continue to fight for more research, funding, better medications specifically geared towards eosinophilic disorders and eventually a cure! Some days are more challenging than others but we must continue to live as normal as possible and not let EoE or any other form of eosinophilic disorders steal our life… steal our JOY. As a parent I can only imagine the heartache you must face each day. However, I want to encourage you to keep your chin up and always try and seek JOY for your precious one. The smiles and laughter are often what help us all make it through the most difficult and painful days. Cuddle and rest time is also essential.

    Thank you for your kind words. I don’t consider myself much of an inspiration (but thank you) …. I’m just someone wanting to help raise awareness for all who suffer. I want people to see that even though we have this disorder you can still live and love life. We are NOT EoE (or any other form) but we are *insert name here*. We simply have to make adjustments in our lives.

    Keep loving your precious one and keep praying APFED and all those involved get the recognition and funding needed. Keep in touch! Let me know how your sweet gift, your little one, is doing.

    Many prayers and hugs,

    Char~

    #12704
  21. Michael M.

    Hi Char – Thanks for posting about EE. I am 39 and was just diagnosed with EE last November. I agree that a strong and understanding Dr is critical. I went through a period where the pain was so intense I could not function and just chose not to eat for weeks as the Drs didn’t have a clue on how to help. then I found a great Dr, started a food diary, and entered a clinical trial for a new EE drug. So far so good, although I did have a set back last week. right now mY trigger foods include milk, barley, alcohol, eggs and a few others we can’t seem to pin down yet… for your poster Mari who lives in DC – you need to contact Dr Oral Alpan. he is in northern VA. he is amazing and I actually walked out of his office with tears in my eyes – tears of joy since he was quickly able to diagnose, and begin treatment especially after a previous Dr had told me to quote “keep my fingers crossed that whatever it is goes away.”. Dr Alpan also works closely with DC area Gastro Drs which is obviously also key. his information can be found here: http://www.yelp.com/biz/alpan-oral-md-annandale
    Good luck everyone with this absolutely terrible disease which comes out of no where!!

    #13426
  22. Michael,

    EoE has been a challenge for me. My meds are not always as helpful as we would like. Recently I went 2 weeks with as little as a few TBS. of food in 3-4 day time period then I would eat a half cup of food the following day only to find myself back to a few TBS of food over several more days, etc. I was exhausted. I was hurting. I was hungry. I felt so weak. What most folks take for granted we pray for. Simply to be able to eat food like every other person. Being a cook/baker/recipe creator and a foodie and not being able to eat is extremely difficult. Unfortunately, I am still uncertain what my triggers are.

    I am so thankful for APFED and those who are helping to gain more exposure, funding and research towards better medications and eventually a cure. I will be speaking more in public about this disease. I have started by speaking to my team of doctors and keeping them abreast of all the information APFED and other organizations are finding. We need to stand together and show the world we are living with this challenge yet we refuse to allow it to steal our JOY. Together we can accomplish great things…. and I pray that soon we would have specific medications to help us so that we can continue living life to the fullest. One day there will be a cure! We must BELIEVE!

    Thank you for sharing the information for Mari. This is my desire. That we all come together, help one another out with encouragement, support and helpful suggestions for doctors. I was very private about my challenges but realized quickly that speaking out would not only help myself but so many others. Especially those so young they don’t have a voice yet. Please keep me updated on your progress. Join the FB pages created for those of us suffering with Eosinophilic Disorders. Join APFED and let’s work together in the fight for a cure.

    God bless you, Michael. Thank you for sharing with me and all of our fans. May we all one day be able to feast together with pure JOY and without pain. I pray it be so!

    Char~

    #13427
  23. Michael M.

    Char – Thanks so much for the reply. Completely agree with you that the simple joy of enjoying a meal is all I want back! I can’t imagine being a parent with a child affected by EE – bless you all. It doesn’t help that if you Google it, there is almost nothing out there on EE. I really appreciate you getting the word out and becoming an advocate – I was so happy to come across this post..I’m joining APFED today. Thank you!

    #13447
  24. You are most welcome, Michael! Just remember, you are not alone in this battle. Coming together for the greater good of all is what needs to happen so it’s an honor to work alongside APFED so we can gain better understanding and watch progress develop!

    #13453
  25. Frank A.

    What is the new EE drug currently under clinical trials!!?? I’d love to hear more on this–what the drug may do, the pharm company developing it, etc….

    #15263
  26. Michael M

    Hi Frank – The investigational drug is a steroid (fluticasone proprionate). It is commonly used in inhalant form for asthma (Flovent, Flonase) and they are studying a soluble pill form, since the inhalant delivery method is not the most optimal way to admin a steroid into the esophagus. I can not remember the name of the drug company, but I believe they are going to wrap up the study this fall.

    #15325
  27. Frank A.

    Thanks mucho!! My son already uses the Flovent version, so maybe the company that makes that is working on this. Hopefully–of approved–the pill form will work better!

    #15366
  28. Michael, THANK YOU SO MUCH for responding to Frank! I have been crazy busy with the book coming out in just a few weeks as well as having challenges with my EoE which caused for immediate biopsies just a few days ago. I have been on Flovent as well as the highest safe dosage of an acid reflux med for the last 2 years. I also go on Prednisone when it’s in a serious flare. Flovent has indeed helped but I often go several weeks without much food at all because of the complications/reactions. Eating ebbs and flows. Those of us using Flovent MUST SWALLOW and not inhale the med like a regular asthma inhaler otherwise it will not be effective. Also make sure you rinse and spit because you can get thrush in your mouth. At first I was not using it correctly but after my amazing allergist saw what I was doing he quickly corrected me. The only thing that kills me is the fact I can not drink water for 3 hours afterwards. I NEED to stay moist and I drink 2-3 gallons of water a day. Having 6 hours a day (Flovent is taken 2X a day for me) without water is incredibly difficult so I am praying the pill form will indeed come soon! The name of the drug company is GlaxoSmithKline. THIS IS NOT MEDICAL ADVICE. I am not a doctor! I only play one upon occasion. *wink*

    #15380
  29. Michael M

    Char – I too hate the fact that you can’t eat or drink after Flovent. And thanks for the remind to rinse afterward. I can not tell you how many times I have forgotten to do that!

    Frank – I hope the pill version comes out soon as well – definitely a better delivery method – especially for children.

    #15393
  30. Becky

    Thank you so much, Char, for being a friendly vessel for all of us to connect!

    I was wondering if anyone has had any success with NAET acupuncture for EOE. I’ve read about a few cases where infants received weekly treatment and were able to get off the feeding ports and eat normally – the moms had photos of healthy esophagus’ and low white blood cell count in the tissue when the treatment was done. But, I can’t seem to get a hold of any of the moms. Does anyone know about this treatment?

    #48873

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