Facing life with a rare condition like Myasthenia Gravis or Congenital Myasthenic Syndrome (CMS) comes with unique challenges, but it also brings the opportunity to cultivate resilience, compassion, and connection. In this blog, we’re excited to share the inspiring stories of two sisters, Uruj and Anam, who have faced these challenges head-on with unwavering strength and an incredible bond. Through their experiences, they’ve not only navigated the complexities of living with CMS but have also become advocates for inclusion, awareness, and empowerment. Join us as we dive into their journeys, learning about their lives, careers, and how their condition has shaped their perspectives. Their story is a testament to the power of sisterhood and family support.
Can you each introduce yourselves? Share a little about who you are, your interests, and what your day-to-day looks like.
Uruj
Hello! My name is Uruj, and I work as a Healthcare Quality Assistant at a local community health center. I hold both a Bachelor’s and Master’s in Public Health, and I’m also a Certified Health Education Specialist. One of the things that truly excites me about my field is its diverse nature—it’s a blend of research, programming, education, policy, advocacy, and much more. I’ve always been passionate about justice, and public health has allowed me to channel that passion into my career. It feels like just the beginning, and I’m excited for where it will take me!
I’m also a very family-oriented person and place a high value on community. I believe that we’re not here just for ourselves, but to share our diverse experiences and perspectives with those around us. This isn’t only important for our social well-being but also plays a vital role in shaping a more inclusive society—especially as we see more diverse teams emerge in the workforce and leading to amazing outcomes as a result!
When I’m not working, I love to draw, paint, or simply spend time with my friends and family. And of course, I enjoy unwinding by binge-watching my favorite shows, like Survivor! Even when my friends and I can’t meet in person, we stay connected by playing online games and hopping on calls to catch up.
Anam
Hello. My name is Anam and I’d like to start by saying that I have had the blessing of being a quadruple minority which has given me various perspectives throughout my life. I am a disabled Muslim, female, Pakistani immigrant who has overcome Congenital Myasthenic Syndrome since being diagnosed at the age of 6 months old. Based on my personal experiences and professional background as a school psychologist, I would like to start this blog by emphasizing the importance of reframing our thoughts and being selective about the language we use regularly. Both of these can drastically impact our ability to become not only productive members of society but also our overall quality and outlook on life.
Some of my interests would include reading poetry related to self-growth/healing, journaling, listening to meaningful podcasts, going on nature walks, and trying new cafes as often as I can as I am a big coffee connoisseur. My day-to-day life starts by waking up at 6 am and taking my medications as I prepare for work by getting dressed, completing my morning prayer, and eating my breakfast which is typically small as I am more of a dinner person. My work day as a high school psychologist then proceeds from 7:30-2:30 which involves me counseling my students who may have social-emotional needs related to self-esteem, self-advocacy, emotional regulation, etc., as well as conducting psychoeducational testing which includes cognitive and social-emotional screeners. Once I arrive back home at about 3 pm, I allow myself time to rest which is crucial considering the chronic fatigue which coincides with our condition.
Typically, I do not make any plans after work, as I have learned to listen to my body over the years, which requires me to rest during the weekdays. I rest for about 2 hours and then spend the rest of my day with my family, doing an activity I enjoy, and completing the rest of my prayers. I do make it part of my to-do list to annoy my younger sister, Uruj, at least one or two times before the day has ended. Haha. I would describe myself as a homebody, but during the weekends I have been aiming to make plans with my friends and family members more regularly.
Can you describe your experience being diagnosed with Myasthenia Gravis as infants? How has this condition shaped your life?
Uruj
When I was about 3 months old, I was diagnosed with Myasthenia Gravis. However, it wasn’t until high school, when I got a new Neurologist, where I discovered I actually have Congenital Myasthenic Syndrome (CMS), which is similar to Myasthenia Gravis but differs in that my condition is genetic, not autoimmune. I mention this because it is extremely important to have the right diagnoses, and I am blessed to have a great care team that helped me discover mine.
Growing up, I’ve always felt incredibly fortunate. I’m blessed with a very supportive family, especially parents, who always believed that their children are capable of greatness, no matter the obstacles we may face.
Life with CMS hasn’t always been easy, but it has shaped me into the person I am today. It’s made me humble, respectful, and especially grateful. I’ve gained a deep understanding of what it’s like to not always have a voice in spaces that may not be welcoming to those with disabilities, or anyone who is different. My disability has actually motivated me to pursue an education and career in public health—where I can engage in research, implement programs, and gain a better understanding of health policies. Ultimately, I want to have a positive impact on underserved communities, who, like my parents always knew, are also capable of greatness.
Anam
Being diagnosed at such a young age, Myasthenia was always considered my, “Normal”, to me and became part of my daily routine. Ironically, my symptoms were and to this day have been routinely inconsistent. Every day was different. Some days I felt stronger than others. One day I could lift my arms to brush my hair and do a ponytail for myself, the next I would ask my mom or older sister to do it for me. One day, I could have a decent amount of energy to make it through the day, the other felt like walking around with an elephant on my back while wearing wet denim clothing. Going up the stairs in public and participating in gym class as a child with muscular weakness and fatigue was anxiety-provoking. I remember feeling the anxiety overwhelm my mind and body right before going to gym class and during activities that required a significant amount of muscular exertion. I remember being laughed at by some of my classmates when I would have trouble running or difficulty shooting a ball at a basketball hoop. Also, I became self-conscious to the point where I would secretly take the stairs on the other side of my school so that students could not see how I went up the stairs, ultimately contributing to my levels of fatigue. As a child, I would be upset and at times frustrated when I was unable to do things which resulted in me becoming very selective about who I let within my small inner circle.
However, as I transitioned into adulthood, I realized that nobody has the right to make assumptions about challenges they have not encountered firsthand. This includes family members, friends, colleagues, co-workers, and anyone else who you see regularly. These experiences have not made me weak in any way, rather they have contributed to my overall character and how I treat others. Myasthenia has made me resilient, kind, patient, empathetic, mindful of others' challenges (especially those that are not always visible), adaptable to changes in situations, insightful, and a person who genuinely cares about the well-being of others.
How has your relationship as sisters impacted your journey with MG? Are there ways in which you’ve supported each other through challenges?
Uruj
Having a sister with the same disability really provides me with a unique kind of support system—especially since I’m the younger sister. We’re actually 4 girls in total, so I have 2 other sisters who, while they don’t have the condition, have always tried to help and take care of us in any way they can. But Anam and I share something that makes our relationship a little more special. Although we both experience CMS differently—since everyone faces struggles in their own way—we still understand each other on a deeper level. On days when our condition flares up and we’re feeling down, we’re able to motivate each other in a way that doesn’t feel patronizing, because we can relate to what the other is going through. We even have a ton of inside jokes about our disabilities, and we’re constantly making them—our friends have caught on to a lot of them too!
I can’t emphasize enough how lucky I am to have such a loving family, and I’m especially grateful to share this experience with my sister, Anam. We’ve always been the closest out of the 4 of us, and I’m not sure if that’s because of our diagnosis or just because we’re the "little sisters". Either way, we do everything together! Whether it’s watching shows, playing video games, texting each other random updates about work or our days, or just lounging around in each other’s rooms until we finally get on each other’s nerves. One funny thing that always happens is that people often think we’re twins—despite me being 5 years younger than Anam! We even went to the same university, and there were times when people would confuse us for each other, which led to some pretty funny (and weird) encounters. Now, we just laugh about them.
Anam
I am not sure if my younger sister is aware of this, but I would say she has been one of the main, if not the biggest, motivators in my life. We were always raised to be self-sufficient so that we are never financially dependent on anyone else and can take care of ourselves independently. Throughout my educational career, especially as a senior in high school, I was overwhelmed with my Myasthenia at some point and discussed it with my father. My father listened to my concerns, was empathetic, and told me that he would support any decisions I made after high school. This was related to whether or not I felt confident enough to pursue a college education. My father ended the conversation by saying something that resonated with me which was, “ Anam, we will support you in any decision you make and you have been a great inspiration for Uruj thus far.” At that moment, I realized that if I did not pursue a college education, it may have prevented Uruj from pursuing her own lifelong goals. I did not want her to ever believe that Myasthenia had that much control over our lives to the point that I did not pursue my own goals because of it. It is because of Uruj that I kept moving forward in life and realized how strong I am. Since I am the older sister, I have always been especially protective of Uruj. I have shared all of my relevant educational/work experiences with Uruj to ensure that she received the appropriate levels of support necessary to assist her with achieving her goals. In addition to this, we make sure to check in on each other and use our great senses of humor to discuss the challenges we have overcome over the years.
What role has your family played in helping you manage life with MG?
Uruj
Our parents have played a huge role in how we’ve been able to grow and thrive. They immigrated to the United States from Pakistan about 30 years ago with 3 children, one of whom was Anam, who had just been diagnosed. They came here seeking better treatment for her and initially settled in the Bronx. They went through so much—whether it was finding a place to live, my dad working various jobs to support the family, or both parents alternating who would stay at the hospital when one of us got sick.
Despite all the hardships they faced, my parents have never once belittled our abilities. They’ve always motivated us, even from a young age. Education was a top priority for them—no matter the circumstances, they made sure we all went to college. Growing up, they were very strict about academics and weren’t going to let our CMS hold us back from achieving good grades. Now, all 4 of us girls have earned post-graduate degrees!
Our 2 older sisters have always been incredibly supportive when it comes to our condition. We’re all very close, especially when we were living together at home. Some days we were best friends, and other days we’d spend hours arguing over small things. But our older sisters always had a more protective instinct toward Anam and me, especially since we dealt with CMS, but also likely since we’re the younger sisters. While they can’t fully understand what it’s like to live with CMS, they would do anything to support us—both physically and emotionally—when it matters most.
At the end of the day, we’ve always had each other’s backs when it comes to family!
Anam
My family immigrated from Pakistan in 1996 so that I could be provided with medical treatment for my Myasthenia as I was consistently in and out of the hospital during my infancy. It is important to recognize the sacrifices my parents made for my family. My father was a Major in the Pakistani army which he had been part of for approximately two decades, but when it came to my medical treatment, he did not hesitate to retire from his dream career so that I would be able to live. My mother, whose entire family lives in Pakistan to this day, and is not fluent in the English language, also did not hesitate to take care of me and what I needed to survive. My parents left what was familiar to them, their home, their friends/family, and their culture and raised me and my three sisters in the United States with only about $160.00 when they first came to this country. My parents recently shared with me that when I was an infant and they had first transitioned to the Bronx, during the snowy, winter months, they would walk me in a baby cart to my doctor’s appointments and would alternate gloves as they took turns to push me. If loving someone was described as a moment/picture, their walk in the snow would be an accurate depiction. My parents never complained about the financial, physical, or emotional tribulations they had to endure and managed to raise my three sisters and I to become successful women who have never let anything stop them from reaching their full potential. In addition to my parents and younger sister, I am fortunate enough to have received assistance from my two older sisters, Gulo and Khushi. As older sisters, they were always protective of us growing up. Khushi being the eldest, would watch me or Uruj, as Gulo walked with my mom to doctor's appointments since English was not my mother's first language, since my father would be working as the sole provider for our family at the time. Although Uruj and I had Myasthenia, my older sisters never treated us any differently. They never treated us as fragile or inferior beings and were always there to support us throughout our lives. To my loving family, there are not enough ways in this world to thank you for all that you have done for us. It is because of your prayers and confidence in our abilities, alongside our efforts, that Uruj and I have made it this far.
Are there any specific challenges you’ve faced that stand out in your journey, and how have you overcome them?
Uruj
Throughout my life, I’ve faced many challenges, particularly social conflicts due to my disability and medical issues. However, one experience that stands out actually happened last year, and was particularly negative and scary. I contracted two types of foodborne illness which led to severe GI issues and I became so weak I could barely stand. I was admitted to the hospital primarily because I could no longer use the bathroom on my own, and I had a high fever (103.5°F) and rapid heart rate. I even believe I was experiencing sepsis in the ER.
On my 3rd day in the hospital, the admitting doctor insisted I be discharged, despite my worsening condition. She never consulted my neurologist or the hospital’s neuro team, and when I expressed that I wasn’t ready to go home, she dismissed my concerns, saying, “Well, you have family, right? They’ll help you.” I tried to explain that the IV fluids were helping, but she abruptly decided to stop them. I was so weak that I couldn’t advocate for myself, and despite crying in front of her, she showed no empathy. In that moment, I realized I was experiencing the very thing I’ve studied and am passionate about: medical ableism.
I was discharged, but within 3 hours, I was back in the ambulance and readmitted, this time to the ICU. There, the neurology team closely monitored me, and after 3 days, I finally started to improve. This experience has stayed with me because it truly highlighted the gap between medical professionals’ expertise and the lived experiences of patients. I believe the doctor dismissed my pain partly because I’m a young woman who “looked healthy”, but in reality, I could have faced serious consequences if I hadn’t returned to the hospital.
While that experience was deeply unsettling, it made me reflect on the larger issue of medical neglect, especially for marginalized populations. For example, Black women are 3x more likely to die during childbirth due to medical neglect. Not being heard during a medical emergency, especially one as traumatizing as childbirth, is terrifying, and having experienced something similar only strengthens my resolve to advocate for those who are not being listened to or respected.
Anam
I would say a challenge I have consistently faced throughout my entire life starting from elementary up until now in the work setting would be people lacking decency when it comes to making assumptions about a challenge they are not knowledgeable of. This has involved extended family members, friends, co-workers, administrators, etc. I have people assume at times that I do not wish to partake in an activity/assignment due to my preference, rather than understanding my decisions stem from my limits based on my disability that I have no control over. Thankfully, the knowledge I have acquired over the years related to the symptoms of Myasthenia and my legal rights under the Americans with Disabilities Act (ADA) has helped tremendously when it came to discussions related to my work accommodations and making sure that I was being treated fairly and not differently than my non-disabled peers. Also, learning how to stand my ground when it came to and being confident in my abilities over the years has helped to communicate any concerns/comments that I had related to either my educational or work experience.
What advice or encouragement would you give to other siblings or families navigating a MG
diagnosis or a diagnosis of a family member?
Uruj
To anyone diagnosed with MG/CMS, one of the most important pieces of advice I can offer is to become an expert on yourself. This is essential not only in medical settings but also in social situations and throughout your educational or professional career. There will be times when others question your disability—whether out of curiosity, ignorance, or even doubt because you might "look healthy". It’s important to find a way to explain your diagnosis, your strengths, and your limits in a way that feels comfortable for you. Remember, you deserve self-respect and never need to justify or prove yourself to anyone.
Also, don’t let anyone define how your disability will impact your future. Whether it’s an employer, a teacher, a “friend,” or even a relative, you might hear comments like, “How will you handle the real world if you can’t even do this simple task?” Keep in mind that what’s simple for some can be a major challenge for others, so never let that discourage you. We all have unlimited potential for success, and we all follow unique paths toward our own destinations. I always knew I wanted to work in healthcare, but I initially thought being a provider would be too physically demanding for me. Then I discovered public health and realized there was a whole other side to healthcare that I could pursue. I put in the work, did my research, and 6 years later, I’m an expert in that field!
To family and friends of those with MG/CMS, the best thing you can do is listen, validate, and advocate for your loved ones, especially during difficult times with their condition. Anam and I are fortunate to have not only a supportive family, but also incredible friends who look out for us. Whether it’s helping us carry things or reminding us to take our medication, even the smallest gestures mean more than you might think.
Anam
In the past 29 years of my life, I am happy to say that I am proud of all that I have achieved and I hope my fellow members of the Myasthenia community also develop a great sense of self-love to pursue their dreams. To provide conciseness and clarity, I have listed bullet points of advice below:
Know your legal rights. Familiarize yourselves with the Americans with Disabilities Act (ADA).
Connect with appropriate staff members regarding 504 work/school accommodation plans.
Be honest with yourself and others when you are having a hard day. Allow yourself to feel the frustrations and moments of sadness that may come along with living with a chronic illness. Take time to process your emotions healthily and then channel this energy into something positive.
Remember you cannot help others until you help yourself.
Find your go-to person during times of need. This could be a friend, family member, or anyone that you feel would be able to validate and empathize with your struggles.
Remind yourself daily that you are doing the best you can and that is all that any of us can do.
Listen to your body. Do not overexert yourself to please others. When making plans reach a compromise for both parties. The famous quote written by Dr.Suess comes to my mind with this bullet and is listed below.
“Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind.”
Develop a self-care regimen.
Your efforts are more than enough and if someone cannot appreciate that, it is okay to maintain healthy boundaries to protect your mental well-being.
Respectfully address anyone who disrespects your efforts, whether intentionally or unintentionally.
By doing this you set a baseline for what behavior you will and will not accept from others.
Make a list of things you are grateful for every day. This can be related to your abilities, loved ones, your job, your food, your shelter, etc.
Reflect on all that you have accomplished. No accomplishment is too small to be recognized.
Focus on what you can do and make a list.
It is okay to be upset about being unable to participate in certain gatherings/activities, but that is not the end all be all. One of our superpowers as members of this community would include being able to adapt to most situations. Think outside of the box and have fun within your limits.
We may not be able to choose our circumstances, but we do have the ability to determine how to react to them.
Reach out to Myasthenia organizations for resources/support.
Develop a mantra/verse/phrase to say during moments of frustration/unease.
The verse I have used throughout my life derives from my Islamic faith and states, “Verily, alongside hardship comes ease. Verily, alongside hardship comes ease.”
How do you stay positive and motivated? Are there any particular activities, hobbies, or routines that help you maintain balance?
Uruj
Having hobbies and passions is incredibly important, especially when you have a disability where certain activities may be off-limits. It can feel really discouraging to not be able to participate in things that able-bodied people get to do every day. So, for me, drawing has been a love of mine since childhood. I’ve always enjoyed appreciating art in various forms—whether it’s sketches, paintings, TV shows, video games, and more.
Unfortunately, I haven’t had much time to paint or draw lately, but one thing my best friend and I love to do is to watch shows together and have long discussions about what we see, which is another form of art in my eyes. It’s something I look forward to and will continue to enjoy for years to come!
We’re also practicing Muslims, so prayer, reading the Qur’an, and exploring Islamic narratives help keep me grounded and motivated. I believe spiritual health is incredibly important, and it doesn’t have to be tied to any religion. Taking time to reflect on the highs and lows in life, having a favorite speaker or public figure to look up to, and engaging in activities to clear your mind all contribute to spiritual well-being. It’s something I feel isn’t discussed enough, but it’s essential for all of us to incorporate into our lives.
Anam
My faith has contributed to my ability to stay positive and motivated. I have to thank my parents for instilling the values of gratitude and perspective from the Islamic faith into my and my sisters' lives. My parents always told me and my sisters, “Never look at those considered to be above you, but rather focus on those people who pray for what you have and are able to do.” With this many positive affirmations can come into one’s mind. I have listed a few that I repeat to myself below:
I can see.
I can eat independently.
I am about to walk at my own pace.
I can drive.
I can contribute financially to my household.
I am doing my best every day.
I can speak at my own pace.
I am a kind person who cares for other people.
My condition has made me understanding.
As long as I know I am trying my hardest, the opinions of other people do not matter.
Your Myasthenia is nothing to be ashamed of. It is part of you, not all of you.
Is there anything else you’d like to share about your journey, your relationship, or your perspective on living with MG?
Uruj
The biggest takeaway for me is the importance of having a strong support system—whether it's family, friends, or a community. These connections, especially from childhood, help shape who we become. I’m incredibly lucky to have had such a solid network, and a special shoutout to my best friend of 18 years!
Here are a few key points I keep in mind while navigating life with MG/CMS:
Medical: It’s crucial to find primary care and specialists who are the right fit for you. Although insurance challenges can make this difficult, there are resources available to connect you with the right team. Your providers should never push their opinions on you or make you feel unheard. It should be a collaborative process, where your expertise is valued as much as theirs.
Social: I have mentioned several times that community is key, so I won’t go into that again! But, I’ve encountered awkward social situations where people do not know, misunderstand, or make assumptions about my condition. You don’t owe anyone an explanation, but it helps to be prepared with a response if someone gets too curious or nosy, like asking why you use the elevator or don’t attend gym class. Humor can be a good way to handle these moments, but it’s also perfectly okay to simply say, “Sorry, but I don’t think that’s anyone’s concern but mine”. If they wanna take it as a rude response, I would just make it clear that they may have asked a rude question. Personally, I just do not think we owe anything to someone who is not asking a genuine question!
Professional/Academic: Accommodations have been an important part of my life, especially as I’ve entered the workforce. It’s essential to discuss accommodations with your specialist, especially when you’re requesting them for the first time. Your provider can help guide you in figuring out what you need. Unfortunately, some professionals don’t always react well to accommodations, but it’s important to stand firm if someone questions them—especially when you’re doing your job well. We have rights under the ADA, and also just as human beings in general. I’ve had to leave a job in the past because my supervisor was dismissive during an accommodations meeting, but I’ve since found a supportive work environment where I feel valued, secure, and appreciated. You should never have to settle for feeling unsafe or uncomfortable just to keep a job.
Anam
I graduated with my 6th Year Certification in School Psychology in May of 2022. It is due to all of the tribulations that my sister and I have overcome throughout my life that I chose a career where I would be able to assist those who may have difficulty advocating for themselves. We must remind ourselves daily that everybody is dealing with something we know nothing about and that even the slightest act of kindness can make a huge impact on someone else’s life. For those of you who are currently going through a challenging time, whether it be physically, mentally, or financially, I want to tell you that I am proud of you for coming this far. Life is far from easy, but if there’s anything I have learned in the past 29 years is that we must allow ourselves to feel our emotions. If you have accomplished something important to you, be proud. If you have overcome any type of adversity, especially in silence, be proud. Finally, remember that happiness does not come from the approval of others, but rather it comes from accepting ourselves as we truly are.
Comments