Beyond Skin Deep - The Traumatic Effects of Dermatomyositis
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- Опубліковано 10 вер 2024
- In my film, I tell a story of perseverance and faith, describing the journey of my father, Franklin Herrera, who battled a very rare autoimmune disease called Dermatomyositis. Included in this film are testimonies from family members, friends, healthcare professionals and my father himself, alluding to the complexity and difficulty of this rare muscle and skin disease.
The purpose of the documentary is to not only tell my father's story of overcoming a rare autoimmune disease, but to spread awareness and reach and inspire those who are having difficulty with overcoming their own personal obstacles, no matter what it may be.
Hi how is your dad doing today? My husband was recently diagnosed with the same autoimmune disease.
Watching your dad’s video has given us so much hope.
Alex sorry brotha, I hope your Papa is doing better now. I was also diagnosed with Dermatomyositis in 2022, I later got ILD which messed up my lungs capacity and I had to quit soccer. Man it was a painful experience for me. Both Dermatomyositis and ILD were gon kill me dawg.
Alex, thank you so much for this video - I found it so vulnerable and touching that you captured your fathers journey with Dermatomyositis. My mother has been living with this disease for almost 10 years now and I know how grueling and challenging it can be for both the person and their family. It’s so hard to put into words what Dermatomyositis can do to someone and it’s even harder to talk about it when it is happening to someone you love. I was brought to tears during the footage of your father so sick and weak, because I too saw my mother in the same state. I hope and pray that your father and your whole family are doing well. Reach out to me on Facebook if you ever need someone to talk to.
-Garrett Mayfield
I appreciate you Garrett. I will definitely reach out to you. I hope you and your mother are doing fine!
Such an encouraging video. God bless you and your family!
This video touched my soul!! I also have dermatomyositis and i know what he has gone through. I would like to know more about his journey. Please
I hope your journey with Dermatomyositis is going well and that you are feeling better. I am not going to share too much detail regarding my fathers journey on here, but if you can reach out to me via facebook and I would be happy to try to answer any questions you may have.
I’m just diagnosed with this after being sick for more than 20 years! No one can see just how bad I and week I feel! It’s tuff when no one believes your sick! Thank God we found out what it is before it killed me!
Heather, I am glad they were able to diagnose you! Please email me if you have any questions ! I am not a doctor or health expert but I can connect you with two individuals very close to me who are living with Dermatomyositis. Their experience may help you!
Please reach out to me on Facebook
@@coachzander actually I thought I had a diagnosis but I don’t! They suspect it is it but my skin biopsy is non specific and I have a positive EMG and all the symptom like it! So they going to try me on Plaquenel soon. I don’t know if I’ll get a diagnosis. Thanks so much for response
@@heatherr1141 I am not familiar with a plaquenel, but my Dad did have a skin biopsy on his leg, which is thought to have started his symptoms. Praying that you are not diagnosed!
Hi, when you were diagnosed, was the CK level blood test abnormal? What other ways doctors are using to diagnose this disease?
A dear friend of me is suffering this dermatomayositis condition and it has been about 4 years since she start feeling sick, at the very beginning she started with redness face so she tough it was rosacea, then she start feeling her tongue extra sensible, then she start to have her scalp so sensitive, itchy, painful , feeling so tired and sad , she just get the diagnosis after 4 years struggling and the treatment it is NOT WORKING right now, she feels frustrated, helpless, this is so sad 😞
Hi Christina, please reach out to me on Facebook and I can connect you with someone who helped my Dad TREMENDOUSLY with his recovery.
Thank you for sharing this! Good that I know there's hope in this illness.. I am still waiting for my final diagnosis but my doctor think its Dermatomyositis
How were you examined? In my case, after Covid, I started to have an excruciating rash on my face and neck, and I sent a picture to the Dermatologist, and they told me that this was Dermatomyositis. In addition, to that, I had and still have muscle weakness and pain in my back (lungs).
My mother has this i hope you and your father are healthy and strong! I am from greece. My mother has it from last spring. Because it is a very rare disease is it possible to get in touch with you for some guidance and advice on what really worked and what to avoid cause you have all this experience! She was not moving in August at all (only wrists fingers and face) and been in hospital and still we go some days, we do exercises and nutrition and exams and medication but with your experience certainly anything you could add would be very very valuable. Thank you for the video and congratulations for your patience through this you went through.
Hello @iconsnicos, I would be happy to have a conversation with you regarding my father's experiences and your mom's current condition. Please feel free to reach out to me on Instagram or Facebook under the same name.
Great video! How is everything now?
Good! Thank you for asking
Hi, when your father went to ER. How did they find out? I suspect that I have the same disease and I'm 99% sure but I'm worried that they won't be able to confirm. I have the the same symptoms as your father. Everything is the same and I'm also very overweight. Currently, I'm waiting for the CK blood test results. I was thinking if there will be no help. I will go to ER
I hope your CK level results were able to bring some clarity and begin the healing process. The doctors were able to confirm my fathers diagnosis by the symptoms he was having, as well as the blood tests they took.
இந்தியாவில் இப்படி ஓரு மருத்துவம் இல்லை அய்யா மிகவும் கொடுமையான நோய் எனது தங்கை கணவரை இந்த நோய் யில் இருந்து காப்பாற்ற முடியவில்லை மிகவும் வருத்தமாக உள்ளது இந்தியாவில் மருத்துவத்துறை மிகவும் பின்தங்கி உள்ளது 😭😭😭