Freddy's Story: Living with Muscular Dystrophy
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- Опубликовано: 29 июн 2024
- Freddy Loinaz-Lopez, a patient at Penn Medicine Fishman Program for Home Assisted Ventilation, shares his story of living with muscular dystrophy disease.
As an aspiring musician, Freddy uses his music as a source of inspiration. His motto is, “Tienes que respirar,” which means in English, “You have to breathe.”
Through the Fishman Program, a national leader in managing noninvasive ventilation for adults living at home with chronic respiratory failure, he is able to follow his dreams and stay active. His biggest struggle is not being able to move, but he is thankful that he has his mom for support.
John Hansen-Flaschen, MD, Founding Director, Paul Lung Center Director, Jay and Randy Fishman Program for Home Ventilation at Penn Medicine, adds how the program supplies patients with mechanical ventilators that help them breathe at night while sleeping and also throughout the day.
Laura Marchiano, RRT, Respiratory Therapist, uses data from a Sentec machine, which monitors breathing levels during hospital visits, to oversee patient care at home.
Ashley Carraher, MSW, LSW, works with families on open communications and different ways to express themselves.
Freddy is grateful to the Fishman Program team, they have had a tremendous impact on his life by providing overall support both medically and personally.
His advice to others living with muscular dystrophy disease is to “stay occupied, mentally strong, and to have the fortitude to keep going.”
Learn more about the Penn Medicine Fishman Program for Home Assisted Ventilation: www.pennmedicine.org/for-pati...
#PennMedicine #MuscularDystrophy #FishmanProgram 
Наука
Hey I was just watching your video, and I just wanted to say that I will pray for you and someday God will heal you. I also wanted to say that I heard you sing, and I think you have a good singing voice, your a good rapper. Hang in there and keep singing. Maybe someday you can make your own CD.
I lost my son in 2019 due to this disease please God help him and bless him long and healthy life please God
Where can i find this kids music? I want to support him 🙏 You're gratitude is amazing and inspiring! I'm so sorry for your flight!
LGMD2L(Limb Girdle Muscular Dystrophy type 2L) That's my cross.
Go get it brother. Keep fighting. One day, we'll laugh at all this.
Moms are awesome.
She will be there until they have to pry her away.
Hail oh Holy Queen. Blessed are the weak at body and strong at heart. Blessed are those who stand at the foot of the cross and repent. (We are all sinners.)Blessed are those who carry their cross and have the will to carry others.
Live, Laugh, Love, Let go
i hope god will help u and treat u my brother had muscular dystrophy and we did everything we could to get it treated but sadly he passed away on 15 July 2020
How old was he ?
My partner had it and that’s my biggest fear
Has**
This is amazing technology. Also great overall care for these patients with DMD. Until there is a cure for this horrible disease, at least these advances will give them better quality of life.
When will the treatment come
What type does he have?
broootal.