60 Minutes Australia: Allergic to life (2017)

welcome back to 60 minutes one in three of us will suffer some kind of allergy at some stage in our lives for most it means a runny nose a rash or sensitivity to certain foods but imagine if you were allergic to life itself that's the bizarre and terrifying reality for Johanna Watkins the 30 year old suffers from a rare illness which means almost any contact with anything or anyone triggers life-threatening anaphylactic reactions off limits for Johanna most foods smells sunlight friends her parents even her own husband it's rare and dangerous for Johanna Watkins to be exposed to the outside world allergic to almost everything imaginable she's been living in isolation for the last two-and-a-half years thinking of my child not being able to have human contact I have a heart to see the sunlight to not be with her husband not with her family it's beyond my comprehension but today with her husband Scott by her side Johanna is bravely making a journey into the unknown she's moving to the new home that he's built to keep her alive so extremer her allergies every second outdoors risks a life-threatening reaction it's okay to throw up for a fleeting moment God is able to hold his wife in his arms I love you with all of my heart concerning coal might be the loving husband whose very presence has the potential to kill her that day I moved her in was probably the scariest days for me personally than one of the scariest days for her we knew there was a decent chance no matter what precautions we took and we took many that she would go into the space and would go immediately into anaphylaxis and never be able to live there that was a scary feeling as her closest genetic relatives johannah's three siblings are the only people on earth whose natural sin she can tolerate not even her parents John and Gayle can enter her protective enclosure the people are jailed and would subpoena shman often solitary confinement that's Joe Hannah's life Johanna suffers from an extreme form of the disease called mast cell activation syndrome smells dust chemicals food life even changes in air pressure can cause her body to attack itself what hurts me most as a parent though is thinking of Johanna suffering she can't have any human contact when her siblings are in there they have to wear masks the whole time they can't reach out and touch her arm like this and if they do she'll get sack it's a really awful contradiction that she's living in she's surrounded by beautiful family a lot of love and support but at the same time she must be terribly alone oh yeah I I mean I tear up just thinking about it because he just yesterday I walked by and it just you know my heart grieved that he she was right there and I couldn't clear couldn't tell her person that Hey Johanna I love you Johanna is inherently self-reactive her own body hurts her you know the the mechanisms that are supposed to protect your body and Jo Hannah's body hurt her what is she allergic to she is allergic to most foods she is allergic to seemingly most individuals she is allergic to almost every scent you could think of even sense of things that are everywhere simply telling Johanna's story has required a lot of preparation for three days a strict cleaning process clothes carefully lauded standard products and spicy food strictly off-limits bodies hair and hands washed with a special detergent a blitz on the ordinary smells of everyday life hey if you a Scot how are you good may know you and now entering the protective zone that Scot Watkins has set up to keep his wife safe okay I'm glad you're here feet before we go any further and I sort of weird I'm going to actually to smell you it's time to scott to make sure we've done our jobs properly and also anything strong so nothing I don't think there's anything I'm worried about we're good I'm good you're good this is as close as we can safely get to johannes filtered and pressurized chamber downstairs so Johanna is directly below savoir she's in the main floor the only way of communicating directly is by phone or video call no is it working yeah how are you the in diagnosis is resines has meant a lot of lots of being able to be outside in the real world for some of us name for parts losses people love being around so far especially my family and my husband it's mind-blowing because if you had told me six years ago so that this was even possible for my body to behave in this way answer this happened I would have never believed you [Music] just a few years ago Johanna and Scott had the hopes and dreams of any newly married couple so we went on a bunch of hikes and yeah in Portland which was amazing missing a trail of Johanna had spent time in Australia and New Zealand for Blackstock sorry about that hahahaha and both had plans to see much more of the world before settling down to start a family then suddenly johannah's health started unraveling how fast and how dramatic was her slide from a few allergies to a fully blown disease there is a phase where you're not sure you really believe that this is happening there's a phase of this disease where you can't believe what you're seeing there would be times where she would eat a food one day and then the next day she would eat the same food and have an anaphylactic attack and you honestly we both that we're going crazy [Music] Johanna was forced to give up her job as a teacher she became allergic to her friends and her parents then the toughest blow of all that mean to sound disrespectful here but at what point did you become part of the problem I had gone to of my normal barber shop to get my hair cut and when I returned back to our house her throat became tight and she nearly passed out she was you know having an anaphylactic type reaction and so I left the room obviously and so then every day for the next couple weeks I tried to come back in but every day it didn't work and we kind of came to a slow realization that I that she was like allergic to me must be awfully difficult like he can't even hold you want know it's terrible just the the kind of unique loneliness that comes with having have been with somebody you love and then not being able to be with that person even though they're still there it's awful mas cells are our first line of defense found in every tissue they react to threats like illness or infection and tell our immune system how to respond but johannah's masked cells are hypersensitive and send out the wrong messages to the wrong places they could be in odors that she is smelling various physical forces like heat or cold sometimes to pressure or even ultraviolet light for example so johannah's mast cells are totally confused they that's a good way to put it Johanna had been misdiagnosed by 30 doctors until she met dr. Lawrence Afrin a world authority on mast cell activation syndrome but none of his treatments even an experimental course of chemotherapy has turned things around in the past year Johanna has had to be rushed to emergency eight times given her sensitivity to the outside world every trip to the hospital in itself is a threat to her life she needs a new drug and there are some interesting options coming down the the research pipeline but they're not here yet so she's got to ride out the storm and at this stage there's no way of knowing when storms go to pass I'd like to think the odds are in her favor but there are certainly going to be difficult times ahead all right so as we go down here to our left is the pink room I call it where johannah's air system begins right johannah's very survival depends on her air being as pure as possible the room is covered in pink foam which is virtually scentless in the basement scott has built an array of filters to keep the smells of the outside from getting in air is taken from the room and it's passed through many filters and it's literally pumped into her space very quickly so she's breathing this air breathing this air in about 10 seconds she'll be breathing this air after it's been filtered so technically this air is keeping her alive digit room is keeping it out this room is keeping her alive every time she eats Johanna is taking a gamble her ever-dwindling diet is now limited to just 11 individual foods mostly vegetables and spices for more than two years she's been forced to eat the same two basic meals for Agana on lights we've been having a lot of trouble finding parcels Network person can be a huge loss yeah better Scott the pressure is enormous the wrong type of carrot or a cucumber from a different farm can cause an anaphylactic attack as a result he spends 30 hours a week in the kitchen carefully bedding and preparing johannah's food and I look over and see him through the airlock and they could Chen and tears right away come to my eyes defense all that grief will be fresh and I'll miss him and again he went express it and so I miss him a lot even though it's hard I still have him what I guess that is unable to be together Scott and Johanna are constantly on the phone texting and talking to each other on date nights they'll watch the same TV shows at the same time and chat as if they're in the same room it can be the loneliest of relationships but right now it's the best they can do when you can't have a physical relation you how deep does an emotional relationship become right now our relationship can be just as as full and meaningful as anyone elses it just looks really different okay it's up since the move to the new house johannah's health is stabilized but not improved but Scott Watkins remains as devoted to his wife as any husband can be eternally hopeful of the day they can be together once again oh I mentor so much we have to do another subscribe it but I have hope that I'm praying that someday we'll get to be together again physically on your wedding day you made a vow through sickness and in health yep really testing that one yep we just kind of developed a new normal a new system that works and it doesn't have any resemblance to a normal relationship but we've done the best we can I think in with the with the reality that we face I think about her allergies and inability to be with me in a daily sense today she's allergic to me we'll see you about tomorrow

Channel: 60 Minutes Australia

Views: 693,958

Rating: 4.8379664 out of 5

Keywords: Allergies, allergic to everything, Johanna Watkins, 60 Minutes, 60 Minutes Australia, Peter Stefanovic, life-threatening anaphylactic reactions

Id: NpFJw-iO7Yg

Length: 14min 34sec (874 seconds)

Published: Sun Aug 20 2017