Latest posts tagged with #LGMD on Bluesky
🧬La edad de inicio, gravedad, y progresión de los síntomas de los subtipos de LGMD pueden variar mucho de un caso a otro.
Algunas personas pueden tener una leve, lenta forma
progresiva del trastorno; otros pueden tener una forma rápidamente progresiva del trastorno.
#TheAkariFoundation #LGMD
✨ A first experience that sparked new hope
In her latest column, Jakira Avery, who lives with #LGMD, reflects on her first-ever @mda.org event and how it opened the door to connection, community, and renewed hope for a cure.
Read Jakira's latest column: https://bit.ly/4j2adt3
#RareDisease #MedSky
Here I am trying to talk about feelings I experience as they are and
I don't know if my friends in chronic illness and disability community go through these feelings but I am sure they understand me .
#Muscular_Dystrophy
#LGMD
#chronicillness
#Disability
In those moments ,I feel that it would better if I hadn't come to this world at all .
Despite all ,I try to stay stronger as much as I can, within my limitations ;I love life but really I am not able to live it properly as I have to do.
#Muscular_Dystrophy
#LGMD
My real life stopped so many years ago and I lost the best part of it and I am afraid I am looking at its remnants disappearing before my eyes.
#Muscular_Dystrophy
#LGMD
#chronicillness
#Disability
The question that always haunts me :
have I came to this world only to spend my life stuck in one place without being able even to serve myself ?
#Muscular_Dystrophy
#LGMD
#chronicillness
#Disability
And I hope the new upcoming year will the year of change for me .
It's just a wish I eagerly hope it will come true.
I pray I won't fail or rather be failed .
That's my main goal of the new year to come .
#Muscular_Dystrophy
#LGMD
#chronicillness
#Disability
Personally,I know I oftenly won't be well again,but also I hope I won't go on undergoing the miserable life imposed on me mainly by Muscular Dystrophy.
So I won't stop trying to find a means to turn my own life to be better
#Muscular_Dystrophy
#LGMD
#chronicillness
#Disability
Generally,living with a rare disease, completely disabled and house bound in a poor unstable war-affected area is a hard mission that needs huge constant efforts and strength to survive.
#Muscular_Dystrophy
#LGMD
#chronicillness
#Disability
Really,I hope & pray Muscular Dystrophy treatment will be available and I can be cured one day but till that time,all I want is that I can reach my needs and my life won't be threatened by such progressive disease in the future
#MuscularDystrophy
#LGMD
#chronicillness
#Disability
Muscular Dystrophy strips a body off their bodily strength and changes them into a vulnerable person living in a state of uncertainty ،waiting for the next episode of their vulnerability to come for the rest of their life
#Muscular_Dystrophy
#LGMD
#chronicillness
#Disability
At least ,I don't want to leave this world early ,if there's no cure to Muscular Dystrophy in the near future .
#Muscular_Dystrophy
#MuscularDystrophy
#LGMD
#chronicillness
#Disability
#HassanSays
LGMD undermined all my strength and left me nothing except vulnerability .
My muscle bulk vanished progressively ,and now I am getting weaker and weaker over time ,but I won't stop resistance despite all .
#chronicillness
#LGMD
To be honest,I don't feel stroger any more; spending so many years stuck in one place has nothing to do with strength.
I am just forced into such isolation reluctantly and had to choose between giving up and struggling for my life ,I rejected the former and chose the latter
#LGMD
To sum up , as chronically ill people being unable to achieve your goals is not a matter of laziness at all , it's rather a restriction inflicted by chronic illness.
#chronicillness
#Disability
#LGMD
So having peace of mind is a daily struggle for those who are living with chronic illness.
#chronicillness
#Disability
#LGMD
Chronic illness takes its toll on chronically ill people's life and restricts their physical abilities,so that they always are in need of support to keep their daily life going.
#chronicillness
#Disability
#LGMD
What annoys me is that I always keep delaying things I have to do ,not because I am lazy but because I can't do them , either physically or mentally .
#chronicillness
#Disability
#LGMD
I just feel stuck and unable to move forward . However,I will keep trying to turn the miserable situation into a better one and I believe I can.
#chronicillness
#Disability
#LGMD
La terapia CRD-003 está diseñada para entregar un copia sana del gen FKRP a las células musculares, permitiendo a las células producir una versión funcional de la proteína FKRP.
Lee el artículo completo en el siguiente link: lnkd.in/eCFbnV6f
#TheAkariFoundation #DistrofiaMuscularDeCinturas #LGMD
Personally ,my chronic illness deprived me of my normal life and taught me how simple things changed to be so dear when they were lost .
So I simply wish I could stand up again,walk,get out of house and do something for living .
#chronicillness
#Disability
#LGMD
I don't know what you wish you could do,if you are chronically ill and /or disabled people.
#chronicillness
#Disability
#LGMD
There's no certainty about the future as far as I am concerned .
I still need to feel safe .
#chronicillness
#LGMD
#Disability
I lost the most of my life and what was left is not enough for me to keep going, to be honest.
I hope I can collect, maintain ,renovate the remnants of myself and go forward the way that fits the status quo I am living in .
#chronicillness
#LGMD
#Disability
VENTING
Being fully aware you are losing your physical abilities one by one silently,without being able to do anything to stop that loss is like being sentenced to receiving high doses of torture in jail,while your hands shackled for the rest of your life.
#chronicillness
#LGMD
That's why I am obliged to stay in a constant struggle relentlessly to avoid getting in such a possible situation , though I am tired of it.
It's not a joke to be alive without life .
#chronicillness
#LGMD
#Disability
I always find myself suddenly absorbed in thinking about my case and feel that my life stopped so long time ago , then a gloomy image of a possible miserable situation ,awaiting me in the future arises in my mind .
#chronicillness
#LGMD
#Disability
Even though I feel that my life was missed so long time ago, my struggle for getting a new hope is still going on ,no matter how long it akes me ;I am always controlled by the circumstances and environment I am surrounded with.
#chronicillness
#LGMD
#Disability
Even though I feel that my life was missed so long time ago, my struggle for getting a new hope is still going on ,no matter how long it takes me ;I am always controlled by the circumstances and environment I am surrounded with.
#chronicillness
#LGMD
#Disability
At #WMS2025 in Vienna? Check out our PhD student Vera Getmanchuk-Zaporoshchenko’s poster on phenotyping a preclinical model of plectin-related LGMD. #LGMD #MuscularDystrophy"
