Medical Stories - Systemic Scleroderma: Lynn's Story

Lynn Bishop is a non-smoker who developed a cough and runny nose that left her feeling miserable and prompted a visit to the doctor. Her illness was treated as bronchitis but when the medicines didn’t help, further investigation led to a devastating diagnosis. Lynn learned she had an interstitial lung disease called Systemic Scleroderma and was told that she had 2 to 5 years to live.
The cardinal feature of scleroderma is the thickening of the skin, but it can also affect the organs, especially the lungs, as it does in Lynn’s case.
Lynn’s battle took a turn for the better when she became the patient of Dr. Kristin Highland, a leading expert in developing therapeutics in lung disease and the Director of the Rheumatic Lung Disease Program at the Cleveland Clinic.
Learn more about Lynn’s hope filled journey on Medical Stories, an Emmy-award-winning series your public television station.
Medical Stories, is a new documentary film series produced for PBS / Public Television - taking viewers on an emotional and inspirational journey through cinematic storytelling, as the lens focuses on ordinary people going through extraordinary measures of courage and triumph.
The stories of these brave patients are revealed by their incredible willpower to help inspire, improve and transform the lives of others through their own personal narrative and are reinforced by leading medical experts in the field. At times, the patient experience connects them with a remarkable support base community, which often may help contribute to their positive outcome, through a vast foundation of hope and encouragement.
To help raise awareness and to learn more about Systemic Scleroderma, please visit: www.scleroderma.org
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#Systemic Scleroderma

[@nancydunlop4991]

I am a a 20 year survivor of Difuse Systemic Scleroderma. I was diagnosed at 29 and will be 50 this year. I have good days and not so good days planning on at least another 20 💖

[@ajselbehdzet6361]

What is your symptoms did it get involved your organs? Mine is the lungs and I have GERD are you an under any medication

[@nancydunlop4991]

@@ajselbehdzet6361 it has affected my heart, lungs, Gastrointestinal system, skin , muscles, tendons and ligaments. I have gerd and am on nexium nothing else for scleroderma related issues.

[@barryknight]

@@nancydunlop4991 the medicine is so expensive how you survive on that if have raymund and lung problem even worst

[@nancydunlop4991]

@@barryknight I am from Canada and my husband has additional prescription coverage through his employer so it’s not too expensive

[@metappmetapp2507]

Wow Nancy , how did you do it so far...... My brother has been diagnosed with same and he has been admitted to the hospital as his left side of the heart has been damaged.He is just 38... I am just praying nothing happens.... Can you share what worked for you in terms of medicine and diet.

[@cindydominick2605]

I woke up to swollen fingers in 1981 and it lasted 2 weeks then disappeared for 3 years.In 1984, I woke up and when my feet hit the floor the pain was unbelievable. Swollen everywhere and this lasted a couple months. I started to get ulcers on my fingers and Raynauds kicked in. Doctor after doctor could not diagnose me until one of them ran cold water on my hands. Cleveland Clinic confirmed it was Scleroderma. I had worked in a factory that made dishes and I worked with silica sand. I was told that I could live 5 to 7 years. I'm hear to tell you all that I am 70 now and I've had this more then 40 years. I've been blessed to live this long. It was never easy and it still is not. Many battles along the way. We are all warriors.

[@terry7344]

was it systemic?

[@cindydominick2605]

@@terry7344 hi Terry… Yes, I was diagnosed with systemic sclerosis. They found that my lungs were involved and my esophagus. I stayed at the Cleveland clinic for two days and they ran all sorts of tests on me. I left my job 6 months later because my hands started to curl up and the all over body pain was horrible. Time went by, and things progressed rather slowly. They never changed my diagnosis but over the years I think what I have is what they called CREST. What is your diagnosis?

[@cindydominick2605]

@@terry7344 I replied to you early this morning, but I’m not sure if you got it or not. I was diagnosed with systemic sclerosis. As years went by, I realize it was the crest syndrome.

[@tamaraheffler-341]

Hi my name is Tamara and I was diagnosed about 11 yrs ago I've been homeless until 6 months ago and I totally forgot I had this I'm seeing a Dr. On the 20th of February hope she will help me I believe in miracles seeing this on utube has made me see I'm not alone and there is hope...I'm 55 and hope to be here to enjoy my new home for a long while..God bless

[@kristinel6352]

My mother was given 2 to 5 years but she made it 25 years to age 69

[@leahcompton2522]

My son has diffuse systemic sclerosis. He's 23. We believe he became sick at 19. We're praying he qualifies for a stem cell transplant

[@Angelaangelinoo_]

But I was told that steam cell transplant is done only if the patient is in a very progressive stage and meds they don’t help or am I wrong ?

[@leahcompton2522]

@@Angelaangelinoo_ No you are not wrong. My son is very very sick. Right now the IVIG is helping him to have a little more range of motion and not be so fatigued, among other things, but he can only have it for another few months and then we'll see if he starts worsening again.

[@chhive]

I’m praying you will beat this disorder. You’re the storm. My father is diagnosed with this disorder, and I’m hoping he’ll be strong like storm like you.

[@lillyrocks2011]

I hope pharmaceuticals invest more to give us patients with Scleroderma medication/s to stop the over collagen production, fibrosis. And this disease should be taken seriously as cancer. (And we can have more autoinmune conditions at the same time 😢) We're not so few ppl with this terrible disease, we're more and more. What's causing it? Took me years and lots of humiliations, and be misdiagnosed with fibromyalgia, Lyme, depression by ignorant Doctors (rheumatologists, etc)

[@tracymcgrath1192]

Just lost a friend from this. Horrible disease. 🙏♥️♥️♥️♥️

[@GaelyneGasson]

Hi Lynn. I'm from Saginaw MI but live in Australia now. I have Sjogren's and have been looking into scleroderma, as my things seem to be progressing. Thank you so very much for sharing your story. I loved hearing your accent and seeing Michigan produce, but more than that, loved seeing that you've got a great doctor taking care of you and looking out for you. You are the storm!!

[@PhyllisAnderson777]

Hi @GaelyneGasson - I also have Sjogren’s and have thought the very same thing. This disease has progressed so much, that most days are miserable, in pain, extreme fatigue, and many organs affected. Thank you for your comment.

[@deborahcotton9765]

I found out in 2022 that I have Sjogren's. This year, I found out I have Scleroderma Sine Scleroderma as primary and Sjogren's as secondary.

[@jebbiekanfer8843]

They have used methotrexate as a first line therapy along with methyl prednisone for faster results on rapidly developing lesions. Some of the new immunosuppressants are probably candidates for treatment too. Since I’m retired I spend a lot of time on CMEs. I’m doing a deep dive into diseases I really knew very little about. All of you have my prayers that something comes along with a uniform cure for all levels of scleroderma.

[@richardtarter5184]

Hi Lynn,I hope all is well. I like that quote " I am the storm". I was exposed to Camp Lejeune Water in 1986 to 1988, I have Symptoms. I have been in denial for years but after seeing your video I am going to move forward and get help from Veteran Affairs. I am the storm and I'm not going down without turning into a roaring tornado against these symptoms. Thank you Lynn. God bless you.

[@judycochran4473]

My mom sister and 2 brothers passed away from this ,my grandson is in the beginning stages of it and also it looks like I may have it also,it runs in our family and I've never heard anyone say that it is genetic but in our family it is.God bless all and we need more studies on this .

[@darlenekelley6023]

Our diagnosis is very similar. Scleroderma,pulmonary fibrosis,and pulmonary hypertension,and raynuads. I hope the best for you. Keep fighting and never give up.

[@brianhall1129]

I truly wish I could help in bigger ways for people with life changing issues I so wish you the best you and ur daughter are beautiful people ..

[@elizabethconroy7665]

Hi,Lynn Nice to meet you You’ve been through a lot and yet still pushing through Had never heard of this condition before Hugs 🤗

[@theresamurphy6554]

I LIKE THAT IAM THE STORM THANK U ❤️

[@lilliamcantillogroundmaint6833]

I'm only 42 years old just got my diagnosis I'm so scared 😢 not have developed symptoms yet.

[@hoosierbaddy3052]

How do you get a diagnosis without being symptomatic?

[@lillyrocks2011]

Hola, cómo estás? Qué tipo de Esclerodermia tienes? Yo estoy muy asustada. Me siento muy triste. Ojalá hubiera medicación detener realmente la fibrosis de la piel , y de órganos internos.

[@faithf5846]

Thankful to hear they are making a drug to help you. I understand living with autoimmune disease. Praying you continue to grow stronger and heal. 🙏

[@matios6013]

hope you are fine🙏🌺🌻

[@Jane5720]

I wish you well. You have a beautiful daughter.

[@gracemares381]

I'm son has diffuse sclaroderma lupus ild heart diease ra still he 39 yrs old it's a terrible disease hes lost his teeth he has alot of raynards dosen't help during winter I'm sorry you are going through this my prayers to you 🙏🏼

[@daysgoneby3527]

Try looking into plasma exchange therapy there's a video on KZbin about it. It might be a potential help

[@theresamurphy6554]

Yes the winter but not just the winter air conditioning certain temperatures even when it's summer a certain breeze come by is a wrap

[@daysgoneby3527]

Have you heard of the plasma exchange therapy? I'm looking into it as a treatment to stop this getting worse

[@mjblue84]

Excellent video. Thank you! So many women suffering from autoimmune diseases. What is causing this??? Lupus, Crohn's, Scleroderma, RH, Hashimoto's, Celiac (that's what I have), and the autoimmune list goes on and on. They must research for the CAUSE or they won't find the CURE.

[@lillyrocks2011]

You're right!! 😢😢 They don't take it very seriously? I don't know. but maybe they think that are so uncommon so not enough money is being invested. Scleroderma us absolutely terrible. It's really scary. 😢

[@bettina1223]

Very good story. Most people know very little about this disease .I have a family member with this. Also not mentioned is that some patients also have Raynaud's syndrome.

[@theresamurphy6554]

The raynauds annoying but along that are the blisters very very painful! Takes me all day to get heated back up not only the heart jumping can't can't breathe cant sallow good chest pains joint pains feet swallowing hands as well it's very very painful stressful I'm 43 & feel 73 everyday is a struggle

[@barryknight]

@@theresamurphy6554 omg i have the same as you the heart chills

[@raghuveernalla2800]

You're the storm

[@margipagels9116]

which meds are u taking now? pls Imhave the same and Lupus Ild, Heart cond. gerd raynauds

[@theresarasche3173]

My cousin had scleroderma that affected her heart and lungs! She died of a very aggressive cervical cancer 😢

[@user-be2rn3wg5d]

Was she on medication for scleroderma before the cancer?

[@poornimareddy2920]

I'm 39 yrs old recently been diagnosed with scleroderma and my lungs are affected. I have 2 small kids of 3yrs old. I don't know how would I survive with this disease.

[@bellgomez5634]

I just got diagnosed with crest yesterday. I have all name symptoms, I have 3 kids one is an adult and the other two are still young. I am scared not knowing how long I’ll last .. This is extremely depressing

[@cassandracummings115]

Trust God. Read his word and trust him. Stay positive. Eat healthy and speak life.

[@ajh3301]

I was diagnosed with diffuse systemic scleroderma at 21 years old. I am now 56. This disease is debilitating. I have internal involvement in my lungs, GI tract, heart, and severe Raynauds. I have lost the front of both feet as well as a finger. Both my hands are contracted and my shoulders/wrists are frozen. The fatigue and pain are overwhelming at times. Hoping for treatment in the future.

[@nopressurenodiamonds5566]

I am very late commenting to this video, but I am hoping someone can answer this question. First of all, I pray that Lynn is doing well, from the bottom of my heart. I noticed her cheekbones protruding especially on one side. SS is a possibility in my pending diagnosis and my cheekbones have developed very high and protruding like Lynns. I wonder if those are her natural cheekbones, or the disease caused this?

[@theresamurphy6554]

I'm one who has it had it now for 6 years for the dry nails fingers I use Vicks vapor rub so I can be able to move fingers make a fist & helps wit pain from the blisters I wouldn't wish this on my worst enemy it's annoying painful can't swallow solid food feet I can't feel if I hit my hands fingers accidentally the pain & heating back up is an all day thing the heart jumping is more but my fingers hurt typing this but it really does knock u down

[@lisahutchins8186]

Sorry to hear this. All the best to you x

[@chhive]

I hope the best for you, you’re a strong person.

[@SassyO100]

Sorry to hear of your suffering. I’m early in diagnosis so hands have RA like symptoms, painful and get stuck. I really recommend you try getting an Earthing Mattress Cover to allow your body to ground while you sleep. It will help with reducing inflammation in your body. Try it you have nothing to loose. Just plug it in to a socket that is earthed and (no need to switch it on) I’ve managed to get my hands back after a month now of working with this simple earthing equipment. Google earthing or grounding equipment. I recommend this fir everyone now as I’ve had such positive results. 🙏🏽

[@natulcien809]

How's Lynn today?

[@jenniferbowen7353]

I'm 43, undiagnosed, and have so many questions. I haven't felt well for the last 4 years. Swelling and pain is life now. I drop things often. Keys, pens and eating utensils are not my friend. What I originally thought was calluses across my knuckles typically flares up into rashes and cracks and bleeds. I don't even know where to start to find help/treatment/ diagnosis. Please reach out to me.

[@laurent2523]

Hi Jennifer, have you been able to see a Rheumatologist? They are the ones to assess your symptoms, listen to your health history and detail and very importantly run the blood work and other tests you may need that might give you some clarity. On a personal note, Dr Brooke Goldners protocol (you can find her on KZbin) has been an absolute life changer for me and my yet diagnosed condition, which has been a ‘watch and wait’ from my doctors as I have a few blood markers for both Scleroderma and Lupus. Sending healing thoughts your way x

[@missj6564]

Get a dermatologist to do a skin biopsy of a lesion.

[@user-mq9dg4mm1b]

I have been diagnosed with scared don't for a year now I haven't done anything about it because I don't have anyone to help me I have symptoms but I'm doing okay still drinking and smoking

[@biancab2450]

What can someone with this disease eat, and how can I help them with circulation to legs and hands. My mom is diagnosed with this disease and I dont know how to handle it or help her.

[@jenniferrobertson6754]

I just found out that I have sceledrem.

[@gordanalukac1280]

Zasto nedate prevood na srpski jezik?Mnogi bi hteli da cuju.Pogoto koji imaju isti problem.HVALA

[@sameerchaudhary6112]

My aunt is suffering from systemic scloderma. She got acid reflux as her first symptom.