Shaving My Head For Ehlers-Danlos Syndrome Awareness

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In hopes of raising awareness for Ehlers Danlos Syndrome, I will be shaving my head and raising money for EDS. I will be taking pledges and will be donating all the money to The ILC Foundation in Toronto. The ILC Foundation is a Canadian EDS Foundation, they also help people living with chronic pain, and have a research division. Learn about The ILC Foundation here. http://www.theilcfoundation.org.

IMG_5991Ehlers Danlos Syndrome is an inherited connective tissue disorder, it is incurable and something that I live with. EDS means I am lacking the glue in my connective tissue to hold me together. I dislocate my joints regularly, generally daily and nightly. I wear protective braces to help aid in my mobility. EDS isn’t just about joints, it affects my ability to eat, sleep, and function on my own.

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I am disabled because of Ehlers Danlos Syndrome. This condition affects many people and causes it’s suffers to feel isolated, trapped, confused and sometimes suicidal due to not being understood. My hope is to help bring about change in any small way I can. Connecting fellow suffers to the resources we need is vital for our care.

Learn more about EDS it’s types and prognosis here http://www.theilcfoundation.org/2017-eds-international-classification/

I will donate all funds to help aid in research and awareness. I’ll be taking pledges now until August 31st. You can mail your donation to me via cheque make it out to “The ILC Foundation.” Please mail cheque to

Po Box 36083 Esquimalt
Victoria BC
V9A 7J5
Canada

I will mail all cheques to them in one envelope the day of my head shave!

You can donate your pledged amount right to The ILC Foundation here. http://www.theilcfoundation.org/donate/ please let me know how much you are pledging so I can share with everyone how much we raise by the 31st of August.

I will video tape my head shave and put it online. Let’s help raise awareness for Ehlers Danlos Syndrome, let’s make a difference for the younger generation affected by Ehlers Danlos, those undiagnosed and those living with the rarer forms of EDS including the deadly vascular EDS.

Thank you so much for your time. Collectively we can bring about change, together we can make this invisible disorder visible. I remain hopeful now and always.

Farrar Norwoods Story Living With Vascular EDS

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Farrar lives with Vascular EDS, please be respectful of her and her journey as she shares her story in essay format. Learn about Vascular EDS here https://www.ehlers-danlos.com/eds-types/#vEDS

Hello my name is Farrar Norwood, I’m 28 years old & I have Ehlers Danlos syndrome type IV (vascular type). My life changed dramatically when I was hospitalized in 2016 with severe pain in my abdomen. For my family and myself this was not our first rodeo, so knowing what we knew from previous encounters we rushed to the E.R.

I was diagnosed with vascular eds after the beach trip in 2016. It was a typical day there, playing in the ocean with my husband jumping up and down with the waves getting knocked down. I didn’t think nothing of it we continued our day, we had lunch and hit the road back home. Within 30 minutes of arriving to the house I started getting sick feeling nauseous having stomach pain everything!!! Long story short I was taken to the ER where they began to run tests. They asked me even asked if I was in a car wreck because my pancreas and another organ were damaged pretty bad causing the pain. It was that day a team of doctors came in and gave me the news that I had vascular EDS.

When I was 10 years old I got really sick, & as any mother would my mother took me to my paediatrician. He would exam me only to find I was in a lot more pain than I led on. So after a short visit my mother was told to take me straight to the hospital. I was 10 years old but very observant, so I knew something was wrong but didn’t know the extent.

Needless to say, 3 months later I was leaving the hospital with a colostomy bag and a diagnosis of diverticulitis. I was sent home with a nurse so I could get the proper treatment for healing also to teach my mother and oldest sister how to care for me. I was devastated. I was a kid who had never even heard of such thing. To be exact the Drs said I was the youngest child in history to have ever had to go through so much.

All through out middle school I was learning to live the lifestyle I would always live. I was using the nurses restroom instead of the other one, for my own privacy which was really nice of them now that I think of it.

But being treated different was weird to me and I didn’t like it. People didn’t understand and never really asked either. Flashing forward a few years later I had gotten things under control so I thought. Now at this point I was 21 and I am back in the hospital with the same excruciating pain. After a few months and a lot of pressure on the family I was able to go home once again.

Being properly diagnosed I was back in the hospital once again at the age of 26 with the reoccurring pain. .. It was right after a beach trip on the way home when I started feeling really bad. .. So knowing what I know I stay home hoping it would go away knowing I couldn’t rush every time something alarmed me.

After awhile I knew things were getting worse so my husband took me to the er. That day on April 26 after a lot of testing, crying, poking and vomiting, I was properly diagnosed with ehlers danlos syndrome. I was upset to say the least. .. Now dealing with something I never heard of i also had to face that they were wrong the whole time about me having diverticulitis.

Is my whole life a lie? How can this happen to me? Why me? Why now? Why my family? Confused and in shock my husband and I took the news the best way we could. I’m a firm believer in God so 8 I took it a lot better than he did. He never showed any weakness but I knew He didn’t understand. But thankfully now we know, & this just explained all the un explainable things I was going through. So for me it was a sigh of relief but not a great one.

At least now I was aware of what was going on and why. So I was thankful that God blessed me with drs who knew what was going on. So how was my life different before??? Well before I was young wild and free. . now I’m tired, sore and crabby. Lol. But for the most part I have come to terms with my illness and I live everyday as I did before diagnosis. Happy blessed and thankful. Just a little more aware of things that is all.

My typical day goes like this I wake up, I automatically thank the lord for blessing me with another day. I take my dog out to use the restroom, I brush my teeth, Shower, take my meds, and start my day. Everyday is a challenge and everyday I never know how I will feel. Some days are great some days are horrible. But everyday is a BLESSING. So hurting or not I’m thankful.

The hardest part for me in this whole shebang, is not being able to do as much as my mind and soul thinks I can. For instance, I love to bake. Baking and decorating cakes is my passion so being I have huge family I get the opportunity to live out my dream quite a bit. But after doing a cake for hours and hours at a time & on my feet constantly I pay tremendously the next day.

I wake up exhausted as if I never rested and it takes about 3 days to really feel like myself again. Which makes me sad and has led to a slight depression. So things are a lot different now but that doesn’t mean I’m useless, I’m just not as untouchable as I thought I was.

God has brung me this far, I don’t see him leaving me now!!! So no, I can not keep up with others, & I don’t try either because it would kill me and I’m here to live not to be like anyone other than myself!!!

So if there is one thing I would like to tell others it would be to embrace what God gave you and live life the best way you know how, because regardless of what we are made of. We are all FIGHTERS and here to make one hell of mark on this disease. We can show the world that just because our body is weak doesn’t mean our mind and passion to live is!! We are all beautiful individually designed zebras ready to take on the fight!!!!!

“Thank you for sharing your amazing journey with me and the world. It is for sure best to do what is best for you, resting and self care are for sure important. It is a wonderful out look that you have to be thankful for life. Sending you hope always.” -Anna Werrun 

MCAS Masto Life Hacks For Survival

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Masto tips by My lovely friend and me. These tips that have helped us to stay safe. Living with mast cell disease for me is like being allergic to the world. At any given time, from any given thing I can experience anaphylaxis. I find that explaining it to people as, “I’m not technically allergic to everything, but because the diseases my body thinks I am allergic to everything. Thus resulting in anaphylaxis.”

1. Masto/MCAS tip. If you are scent sensitive.
Masks need to be replaced every 4-6 months. If you use an RZ mask the filter needs to be replaced every month. Carry a back up mask, store your mask in ziplock bags to keep the filters fresh. Use one mask for 2 hours then switch your masks. If someone is to spray any scented products around your mask this will compromise your mask.

2. More for scents. Fellow mastos have you ever thought of activated carbon? Like the stuff you use for a fish tank!? Again a big thanks to my friend for pointing out that putting things that have absorbed smell into activated carbon can help take the smell out of it.

3. Air purifiers. Using air purifiers has saved my lungs. Air purifiers can help to reduce the amount of smells we breathe in especially in a apartment. Suggested air purifiers http://www.usairpurifiers.com/air-purifiers-use-chemical-voc.html

4. Reduce stress. Do something you truly love or something that is going to help you. When we are sick many times we forget these things. Even if you start out with something simple this can make a huge difference. Painting, or writing are two things I enjoy. I will also go for a walk (if I am able to).

5. Avoid spicy foods. Spicy foods are Known to increase and make mast cells more angry. This doesn’t just mean not eating them. It means not being in a public place that cooks foods like this, and also avoid things like curry, as it is extremely high in histamine.

6. Be gentle with yourself. When you have brain fog remember this happens to all of us Mastos. You aren’t alone. Many of us get forgetful and confused, try your best to not get angry with yourself, you are doing the best you can in that moment. You are worthy of love and respect from others, but most importantly yourself.

7. Go scent free. Unscented soaps, dish soaps, body products, natural tooth paste/unflavoured no Floride, no dyes , I truly at first did not think that the smells of body products affected me but they truly do, they make me anxious. Throw out the smelly products because they can increase risk of reactions, sometimes this means getting rid of clothes, blankets, furniture, because smells can get caught in materials. I would for sure recommending not to smoke, smoking is terrible for ones health all ready and if you have MCAS this will only increase your risks of bad reactions or anaphylaxis.

8. Try the elimination diet (if this has been recommended by your doctor). Sometimes the yummy foods we are eating can be causing the problem. I have personally cut a large majority of things out of my diet to help me feel a little better. It isn’t a cure, but it does help. I also take cromyln before I eat and this can sometimes make a difference in how you feel after you eat should you have gastrointestinal involvement.

Remember you have great value you and your life matter. When we do our best to educate others about our illnesses, we can help change the worlds perception about rare diseases. You can do this. Remember you are a fighter, you aren’t alone in this, not now not ever.

Interview With A Kyphoscoliosis Zebra Named Lauren

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The questions I asked Lauren are bolded and italicizes. Please be respectful of her and her journey as she shares her journey living with Kyphoscoliosis EDS and much more.

Learn about kyphoscoliosis Ehlers-Danlos Syndrome. https://ehlers-danlos.com/eds-types/

What is your name, and disease/invisible illness/mental health? My name is Lauren I live with Ehlers-Danlos Syndrome – type 6 (kyphoscoliosis) Fibromyalgia, Social Anxiety disorder, clinical depression, cluster headaches/migraines suspected POTS & panic attacks.

When did life change for you? 24th April 2017, the day got my diagnosis for Ehlers-Danlos Syndrome.

What was life like before diagnosis? Painful & almost shameful because I felt like I didn’t have a reason to complain about my pain.

How has your diagnosis changed your life? It’s proved to others that I really can’t do what others can & It’s made me think a lot of my future.

Please describe the best you can a day in the life of you? Usually, if there’s nothing I have to do I wake up & take my tablets. (8 in the morning) id usually try eat as early as possible because of my painkillers, have a bong/joint to help with my chronic back pain & I try my best to spend around 15 minutes cleaning my own personal space, even if that means I have to sit on the floor to be able to fold all my washing without fainting. Small progress is always a victory so I usually reward myself when I’m able to be productive, even ir that means an extra joint/bong or a can of energy juice it helps a lot.

What was/is the most challenging thing you have faced because of your diagnosis? My biggest challenge is trying to manage daily life & my chronic illnesses as it’s so hard to know when you’re going to have a good day or a bad day. So making plans and sticking to them is always hard.

Do you find that you can keep up with others? Not at all, before my fibromyalgia was triggered in 2013 I would have been able to do a lot more.

What would you tell others living with your diagnosis? Even if people are expectant of you, you’re allowed to say no. Your health comes before other people’s happiness.

What would you like to tell others that don’t live with a similar diagnosis? Although you can’t understand entirely what we go through on a daily basis, just try putting yourself in our shoes and keep in mind that everything that we do requires twice the amount of energy as ‘normal’ people.

“Thank you so much Lauren for sharing your journey with us. I agree with you ones health is way more important then keeping others happy. I also agree with you when you say, “A small progress is a victory.” You are not alone in your journey, us zebras need to stay together. Living with Ehlers-Danlos syndrome can be trying, please know you are welcome to reach out to me and others in the EDS community for help. Do what is best for you. Hopeful always.” -Anna

Jesse Shares Her Loeys-Dietz Syndrome Story

 

IMG_5762My name is Jesse and I’m a 32 year old Mom with Loeys-Dietz Syndrome. LDS is a Marfan-like connective tissue disorder that effects my entire body. The connective tissue around the aorta and other blood vessels is weaker. Learn more about LDS here http://www.loeysdietz.org/en/

The biggest complication and fear of mine is aneurysm and dissection of those vessels. I am lucky to have a mild case of my disorder and was blessed to be able to get pregnant when we thought it would be too risky before.

After I gave birth. Not just because I became a parent but because it was extremely tough on my body. I developed more and more chronic pain, and I suddenly had a myriad of stomach issues that made it increasingly hard to eat enough throughout the day. I was fainting more often as well and lost what little energy I had.

I’ve always known I had it but was told all my life it was marfan syndrome.

Even knowing all my life I’ve had a connective tissue disorder, I found it a bit difficult to learn that what I had was something very similar but a little more rare. I was part of a research study to find genes associated with these disorders. Because of the people in that study, a few more genes were discovered and a whole new disorder was discovered, Loeys-Dietz Syndrome.

Before, I’ve had days, weeks, months where it was hard to just get out of bed. Through so much hard work, I’ve kicked almost all my meds and can even exercise now! I’m doing very “normal” things and would even consider myself active for once in my life. I still have many doctors appointments, I get tired more easily than others and still have pain most of the time but I’m feeling way better these days. Even through some pain and trouble eating, I am able to do my house work, play with my son, help out at his school, and go hiking with my husband.

The most challenging thing is my life expectancy. My father and grandfather both died in their mid thirties. Doctors say I have a good chance to live till I’m 70 but this disease is often unpredictable. I don’t want to leave my son without his mom and my husband without his wife.

Do you find that you can keep up with others? Nope. But since doing physical therapy this year and starting to be active, I’m finding it easier. I’ve never been able to keep up with my peers, even as a child. I was kept out of gym class and was always lagging behind everyone physically.

What would you tell others living with your diagnosis? Don’t give in. Don’t give up. Even with restrictions you can fight to keep your body healthy. Fighting by getting off excess medications. Fighting by going to physical therapy to help with pain. Fight back against the weakness and pain. Giving in and not living your life will only make things worse. Movement helps pain. Distractions help us mentally from the stress and depression that comes along with chronic illness. Take pride in every little victory! Life is more challenging for the chronically ill. So those little victories are much bigger for us.

What would you like to tell others that don’t live with a similar diagnosis? Be kind always. You don’t know what someone is living with unless you’re them. My disease is often considered an invisible illness. I may look like a healthy young woman but I have a handicapped placard for my car. I have long, working legs so most people assume I am just being lazy. You can’t see my bad heart. You can’t see a fainting disorder. So just be kind because that person that looks like a mess could be just getting out of the hospital or out of the house for the first time in a long time. We have enough to worry about and to be sad about. We don’t need to worry about what others might be thinking of us.

That I am stronger than I believed. I can do more than I ever thought possible.

I have tried almost vall the pain medications in the world. I have tried medicines to help me sleep and ones to help induce an appetite. Medicines aren’t always the answer. Through hard work and lifestyle changes, I’m achieving most of what those pills did for me WITHOUT the nasty side effects. Work hard and you’ll find something that helps. It’s worth it. I promise.

Thank you for sharing your story with me and with the world. Your persevering spirit rings true in your words. It’s amazing how illness makes us realize amazing things about ourselves like you said yourself Jesse, “That I am stronger than I believed. I can do more than I ever thought possible.”

Interview With Tyler “Living With Vascular EDS”

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In previous interviews we have touched on EDS hypermobile type, and a few times before we have talked to those living with Vascular Ehlers-Danlos Syndrome. Tyler lives with two types of EDS, typhyper-mobile EDS and vascular EDS. Vascular EDS is the most severe form of EDS, you can find info on it here https://ehlers-danlos.com/eds-types/#vEDS Emergency info for those living with vEDS can be found here https://ehlers-danlos.com/emergency/

My name is Tyler, I’m from Charleston, South Carolina, USA. I’m 31, still a songwriter /musician (at home only to write music due to illness), photographer and had to leave my PA externship after graduation due to my illness.

I have Ehlers-Danlos types 3 (hypermobile EDS) and 4 (vascular EDS) POTS, PTSD and mild to moderate depression.

Before my disease I was your normal college kid in a band, using my photography skills to make extra money. I did volunteer work in the summer time, I was an all around normal guy.

My life started changing big at the age of 20. I began to experience joint pain, and lots of dislocations. By the age of 20 I had my first pulmonary embolism and followed by my first stroke. My doctors then knew I had some sort of vascular disease, have already had multiple joint surgeries.

The best day in the life of me now, and I know this sounds sappy, but bringing happiness to someone like myself. I know a few elderly people who don’t have family so I call them in the evening to hear about there day. Check in to see how they are, and make sure there door’s are locked. I try to find ways to do something nice from my apartment, it makes me happy.

The most challenging thing I face is a hard question, since I’m at the final stage of my illness, everything physical is hard. The hardest is keeping up mentally, it would be so easy to just give up, but I believe strongly that if there is life left in me then there is life left to give

I would tell others with my illness, there’s going to be days you don’t think you can live through, but there are others that are just as sick. These people may need your support as much as you need theirs. We need to pull together, let each other know that we’re here 24/7. We should try to live the good days as full as we can. Spread smiles and love everywhere you go when you can get out, we need more love to be shown, not just felt.

I would like others without my illnesses to know that yes I look for the most part normal, but I have diseased organs muscles and joints. Breathing hurts, moving hurts, please don’t have pity on me, have understanding and patience. Don’t leave me and give up on including me in your life because my body is unreliable, not my soul that you liked or loved. Don’t look past me, look inside me, I’m still here.

What I have learned is that I am stronger than I ever thought I was. People are unreliable and since my first cardiac arrest I tell almost everyone that I love them, there are hundreds of kinds of love. We need to share love more. I’ve been free to say how I feel about people early on, because I will never know if I’ll have the chance again.

The only thing I would add about my journey is that I’m ok with it being almost over, both myself and my body are worn out. I’m glad I found this special outlet as I near the finish line. My love to all my fellow spoonies, chronic illness fighters and fellow warriors. -Tyler

“Tyler thank you for sharing with us your journey so far. Tyler was an active and normal man, vEDS has drastically changed his life. He is a fighter, a warrior, and a friend. I admire his strength and resilience. Keep moving forward, you aren’t alone,  us Zebras have to stick together.” -Anna

Interview With Magdalena

IMG_5656I’m from Belgrade, Serbia. My name is Magdalena and I’m 20 years old. I have twin sister and we both suffer from multiple chronic illnesses.

My diagnoses are hemiplegic migraines, nonspecific connective tissue disorder, postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, scoliosis, kyphosis, chronic tension headaches, hypermobility syndrome, hypotension, mitral valve prolapse, heart murmur. I also suffer from chronic pain and chronic fatigue.

Due my connective tissue disorder I’m extremely underweight and only weigh 33kg. My mental health also is not great. I suffer from anxiety, social anxiety, depression and I have some OCD habits.

I started to feel symptoms when I was only 5 years old and my health hasn’t been great ever since. But I think everything started to be more serious when I was 12. I never was “healthy” but last 3 years are the most difficult.

My life before diagnosis was much more the same… I always had health problems and I had good and bad years and periods in my life. So diagnosis didn’t change much for me. I feel worse and worse as the years progress. But healthier times I was much happier. I was able to walk more and to stand longer. Every new symptom and health problem makes life more difficult, but getting the right diagnosis is helping me to understand my health better, and also helping me to accept myself.

My days look much more the same. I don’t have a lot friends due to my different look, people avoiding me so I spending days home with my twin sister listening music, reading, spending time on social media and sometimes when my health allowing me I enjoy to cook. In the afternoon I always go to my dad’s house where sometimes I spending time with my cousins and go to walks.

The most challenging thing for me is explaining to people what is wrong with me. Listening to comments about my looks, and trying to find friends for life. I can’t do a lot of things like people my own age. I’m too weak, I don’t have enough energy. I can’t work, I can’t go out in clubs and have a social life. My quality of life is completely different from theirs.

I wanna tell people with the same diagnosis that they are not alone and that life is much more than diagnosis. You can find small things to make you happy even if life is not perfect.

To people who don’t have these problems, I wanna tell them just one thing: “before you judge someone, think twice.” I learned that is okay to be different. Even though other people are not accepting, it’s okay. That doesn’t change who you are as a person. Eventually you will find people who accept you.

Also I wanted to add that I’m currently waiting to see results of genome sequencing analysis to get more specific diagnosis of my connective tissue disorder.

I’m not anorexic. I’m underweight because my connective tissue disorder stopped my body from developing properly. I hope I will get right diagnosis and proper help soon.

“Magdalena thank you for sharing your story and giving us a look into your life. You are a warrior keep on fighting! I understand where you are coming, people have said the same thing to me over the years. You aren’t alone and us Zebras need to stick together. Take good care of yourself. You aren’t a lone in this, please feel free to message me anytime.” -Anna

If you would like to learn about some of the conditions here follow the links below.

What is EDS (Ehlers-Danlos Syndrome) https://ehlers-danlos.com/what-is-eds/

What is POTS (postural orthostatic tachycardia syndrome) https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome

Inappropriate sinus Tachycardia explained http://www.heartrhythmalliance.org/aa/us/inappropriate-sinus-tachycardia

Mitral Valve Prolapse http://www.mayoclinic.org/diseases-conditions/mitral-valve-prolapse/home/ovc-20307842

Nonspecific Connective Tissue Disorder https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

Learn about social anxiety http://socialphobia.org/social-anxiety-disorder-definition-symptoms-treatment-therapy-medications-insight-prognosis

Learn more about OCD http://www.cmha.ca/mental_health/obsessive-compulsive-disorder/#.WWZngbHF2f0

Interveiw With Ash

IMG_5645Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health? My name is Ash. I’m from New York and I’m 16 years old. I am female to male transgender. I’m currently diagnosed with POTS, Ehler’s Danlos hypermobility type, Depression, Anxiety and I’ve had a spinal operation for tethered cord syndrome. I am also recovering from an eating disorder which exacerbated my illnesses, due to dysmorphia from the illness, and from having a gender identity that isn’t reflected in my birth sex. I hope to be a creative writer who adds representation to the media.

When did life change for you? I used to be really active in sports, but no doctor could figure out why I kept getting so injured, as this happened a lot with me and I was deemed “accident prone”. When I was ten I had my spinal operation and thought the worst was over, until I began displaying other symptoms age eleven and was diagnosed with POTS and EDS while staying in the hospital over my twelfth birthday.

What was life-like before diagnosis? Well I’m both happy and sad for my diagnoses, happy because I don’t have to worry what’s wrong anymore or have a bunch of unanswered questions. But also sad because my illnesses are not curable and I’ll never be able to live my life without the pain or symptoms that come with it.

How has your diagnosis changed your life? It’s definitely had an impact on my mental health. I do not like being thought of as fragile or weak, but once the diagnosis was confirmed, that’s how I was treated and it really got to me, in sixteen and I’ve only begun to start healing emotionally from that. But I’ll take it any day over people telling me “you’re faking it” when I couldn’t produce a diagnosis, test after test. I’m grateful to have gotten out of my wheelchair and to find a treatment that works but everyday is different and hard.

Please describe the best you can a day in the life of you? I just started back at school in February, and when I wake up for school I must take my blood pressure meds a half hour before I stand up. I do this so I’ll be able to walk and move without dizziness. Everyday is different pain wise so all I can do is hope it’s not horrible and continue. I use an elevator key in my school because even though I’m out of my wheelchair, I struggle with mobility. I avoid hot weather because of blood pressure drops, and also try to avoid activities that could cause any sort of dislocation. That can be hard as I’ve dislocated my jaw just talking, or my shoulder by picking up a plate of food. Often I can’t hang out with friends on the weekend or after school because the days taken too much energy, physically and emotionally. I try to keep my fluid/salt intake up and take my 30+ pills on time as well as see my team of doctors regularly, but not let it take up my life.

What was/is the most challenging thing you have faced because of your diagnosis? Myself, I hate doubting my ability to do anything and relying on so much to be able to function. It can definitely make you want to give up.

Do you find that you can keep up with others? I try my best, but sometimes I need to call off plans. I don’t like to introduce my illnesses right away unless I need to, because I want to be seen as capable. However, sometimes backfires if I have a sudden flare up and the person didn’t know I had an illness because “I seemed so healthy yesterday”.

What would you tell others living with your diagnosis? Please don’t try to do it alone. This is going to be the hardest thing you’ll ever do, but you wouldn’t get this journey if you couldn’t handle it, if all you can do right now is move your little toe, that is enough and I’m proud of you. Please don’t give up, because then it will win.

What would you like to tell others that don’t live with a similar diagnosis? Please don’t question my needs, I know my body best. I try my hardest everyday, and sometimes it’s still the bare minimum. Please just listen when I ask for help, and listen when I need to be left alone.

What have you learnt on your journey? Sometimes it’s the hardest thing I’ve ever done, but it makes me who I am and it makes me as strong as I am.

Is there anything you would like to add about your journey? I’m kinda scared about my future, especially as a chronically ill trans person. I know I’ll have trouble affording my medical care, but I’ll also have a really hard time finding my transition.

Thank you for sharing your story with me and the rest of the world. I agree with you that others shouldn’t question your needs, you do truly know your own body best. Self care is vital when dealing with life’s challenges. You are brave, thank you for fearlessly sharing your story. Best wishes on becoming a creative writer.

If you would like to learn about some of the conditions here follow the links below.

What is EDS (Ehlers-Danlos Syndrome) https://ehlers-danlos.com/what-is-eds/

What is POTS (postural orthostatic tachycardia syndrome) https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome

Depression and Anxiety explained https://www.adaa.org/understanding-anxiety/depression

Explaining Tethered Cord  https://rarediseases.org/rare-diseases/tethered-cord-syndrome/

A Part Of My Story Part 1 EDS

IMG_5257My name is Anna. Before my diagnosis I had never heard of Ehlers-Danlos Syndrome and wasn’t concerned about having it, until all the major problems and complications arose.

A wonderful photographer named Fred Smith agreed to help me with a photo project to help raise awareness for EDS these are the photos he took of me. You can find more about his photography here https://www.flickr.com/photos/fredsmitht/

I don’t only have EDS and I have multiple complications for EDS in addition to other diseases rare and common.

I created a support group for the Calgary Alberta area in hopes of meeting others with EDS.

I have a YouTube channel where I share my experience, and I create awareness videos for disorders like EDS.

My instagram is dedicated to raising awareness for EDS and the other disorders/diseases that I have. On my blog I share my journey but the favourite part of my blog is the interview section. I love to have others on my blog to share their journey. Everyone’s journey is different, I enjoy learning about others and giving them a platform to share their journey.

I believe that collectively we can make a difference, we can bring awareness to EDS. We can help the medical community and our communities a like see we exist. I believe in the power of unity. I believe in hope for change.

Chronic illness is a journey we shoulder together, with hope and through unity we can carry each other through. It’s important to remember negativity has its time and place. We should never let it consume us nor control us. We are not our illness, it may have shaped us into who we are now, but it is not us in entirety. Embrace who you are. We are all diamonds in a world of charcoal covered stones.

Our hearts maybe covered in scars from those who left our lives, those fair weather friends, lovers, family members, left because of them. It has nothing to do with you. You deserve love, and respect.

Most of all remember your braces do not make you ugly they empower and strengthen you. Wear them with pride. You are beautifully braced. I remain hopeful always for hope is the seed that sprouts strength.

Anyone looking to find me can do so on the following links.
YouTube https://m.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0A
Facebookhttps://m.facebook.com/Annawerrun2/?tsid=0.5619874757248908&source=typeahead
Calgary Support Group https://m.facebook.com/profile.php?id=1904695566468855&tsid=0.26887862873263657&source=typeahead
Vancouver island support group https://m.facebook.com/profile.php?id=776227182552843&tsid=0.10804500989615917&source=typeahead
Find me on instagram @annaweds

Interview With Karissa

IMG_5512IMG_5523Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health? I am 17 years old and from Ohio, America. I have Elhers Danlos Syndrome type 3, postural orthostatic tachycardia syndrome, eczema, mast cell activation syndrome, degenerative disc disease, scoliosis, and vocal cord dysfunction along with severe allergies. This can cause me generalized anxiety and sometimes even some depression.

When did life change for you? When I moved to Ohio from Pennsylvania when I was 15. I suddenly became injury prone. I remember my first big injury was frequent subluxations of my ulnar nerve, originally at cheer camp. At that time, I had no idea anything was really wrong. I truly thought I was just being careless and got hurt as a result.

What was life like before diagnosis? I was always a healthy, energetic, and happy girl. I have always been extroverted and full of life. I would bruise easily, but I always brushed it off. After all, what kid doesn’t get hurt now and then?

How has your diagnosis changed your life? I have had to quiet high impact sports, specifically cheerleading. I also have appointments to help strengthen my muscles and help control my symptoms.

Please describe the best you can a day in the life of you? I wake up and do physical therapy stretches. Then during the school year I attend a rigorous high school and during the summer I go to work. I am a nanny for two wonderful children. I am also a hostess at a local pizza parlour. I typically wear some type of brace for a current injury or to prevent one from getting out of hand. I also have physical therapy and other doctors appointments once a week or so.

What was/is the most challenging thing you have faced because of your diagnosis? Everything went silent. The monitors and doctors panicked voices . Everything went dead. The first night was the worst: I was in the paediatric intensive care unit. Stress levels rising, hearts breaking, and tears being cried. Everything went quiet as I struggled to breathe. When I was 16 I went into full fledged anaphylactic shock. It was terrifying. The not always knowing why my body does what it does is the scariest and most difficult part for me.

Do you find that you can keep up with others? Sometimes it is difficult to keep up in the social scene, because there are things too hard on my body to do. However, for the most part my school life has stayed similar to those in my class as far as grades and extracurriculars go. Getting sick really showed my who was there for me.

What would you tell others living with your diagnosis? Some days, quitting will seem like the only option. But I promise, it NEVER is. Sometimes living feels life just surviving, but truly one day you WILL thrive. We are on this earth for a purpose.

What would you like to tell others that don’t live with a similar diagnosis? Please please please never ever judge what you do not live with. You never know what it takes for someone to get out of bed and face the day. Additionally, many people hide their illnesses because they don’t want to be looked down upon. Someone’s frequent injuries are real and tragic to them, not something to laugh at or make fun of.

What have you learnt on your journey? I’ve learned, as bad as things get, it ALWAYS goes up. In getting sick, I learned to balance on friends and family. In missing a day of school here and there, I learned how to better communicate with teachers and my school community. When in the hospital, I found my future dream career as a child life specialist. When faced with scary obstacles, I learned to put my faith in my religion.

Is there anything you would like to add about your journey? If you take one thing from my story, please understand I am not weaker than other people because I have this disease, in fact in many ways. I’m stronger because of it. This disease was NOT a choice, but it is something I have to live with and learn to thrive with. Overall, just love everyone. You never know what someone is going through behind closed doors. You can follow my progress and treatment or ask questions on :

Instagram: karissalewis2018

Twitter: karissalewis417

Pinterest: karissa2018

Wanting to learn about some of the conditions/diseases mentioned? Here are some links…

What is EDS (Ehlers-Danlos Syndrome) https://ehlers-danlos.com/what-is-eds/

What is POTS (postural orthostatic tachycardia syndrome) https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome

MCAS explained https://patient.info/doctor/mastocytosis-and-mast-cell-disorders

Vocal Cord Dysfunction and what it is like http://www.aaaai.org/conditions-and-treatments/related-conditions/vocal-cord-dysfunction

“Thank you so much Karissa for sharing your journey with me and the rest world. You truly are brave. Hopeful always.” -Anna