Becoming a Doctor with Narcolepsy

January 30, 2016

The following is a guest post sent to us by a young woman with narcolepsy who is in her third year of medical school. She reflects on making a tough decision: whether or not to disclose her diagnosis publicly as a future physician.


While I was diagnosed just a year and a half ago, I’ve had symptoms of narcolepsy since I was 15 years old. I’ve known something was wrong since I was a sophomore in college, but a part of me was too scared to admit it. I downplayed my frustrations and tried every trick I could think of to alleviate my symptoms.
I slept more at night and took intentional naps. During lectures, I would bring a thermos of coffee and pinch myself repeatedly studyto try (and fail) to stay awake. On long drives, I would blast the A/C, scream at the top of my lungs, sing along with the radio, and slap myself across the face. Short of a power nap at a gas station and an energy drink (packed with who knows what chemicals), nothing worked. At the suggestion of my family’s physician, I tried chugging bottles of water during the day and eating less carbs. Of course, that didn’t help either.
Even with all of these blaring signals, I still let other people’s misconceptions of narcolepsy become my own.  “You’re fine…” “You’re healthy…” “You must just need more sleep than most people…” These were the kind of dismissive comments I heard on the rare occasion that I confessed what little control I had over my own body. It took only four years of high school, four years of college, one degree in Biochemistry, $32,000 in student loans, and one year of medical school for me to realize that the sleepiness of narcolepsy doesn’t necessarily look like the character in Rat Race or the dog in the Rusty the Narcoleptic Dachshund video.
Well, now I know. I find myself simultaneously empowered and imprisoned by the knowledge of my diagnosis. All in all, my life is changed for the better. Because of my narcolepsy, I was forced to learn the extent of my own resilience and determination. I’m also lucky that medication has been extremely effective for me. I can also scream “I told you so” to every person who ever suggested or hinted at the fact that it might be in my head. Most importantly, I may have saved my aunt’s life. As it turns out, she also has narcolepsy. And just like me, she let other people’s ill-informed opinions dismiss her own concerns and frustrations.
In 17 months, I will graduate from medical school with an MD—a long-time dream of mine that was almost delayed because of narcolepsy. I want nothing more than to share my story with the world and connect with others who’ve faced the same challenges. But this diagnosis has become my secret to keep. It’s as if Prince Charming awoke Sleeping Beauty, only to strap an iron ball and chain on her ankle. My family tells me I have too much to lose by sharing my diagnosis. Due to its competitiveness, my dreams of becoming a certain type of Anonymousphysician would be ruined if I gave residency programs a reason to view me as a liability instead of an asset (even if technically illegal). Each time I am reminded of the cost of my authenticity, I can feel my cheeks begin to burn. I want to scream, to kick, to cry.
The sad reality is that even as a woman about to enter the medical field, I’m still limited by the misconceptions of narcolepsy. Like Julie Flygare says, we hate that our condition is so misunderstood, so we say nothing. I hope that someday I will be able to help break that cycle.

27 Comments. Leave new

Powerful Perspective: Becoming a Doctor with Narcolepsy
January 31, 2016 12:57 am

[…] miss this highly captivating post Becoming a Doctor with Narcolepsy, now published on Project Sleep’s […]

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Don’t reveal cause I had to give up a nurse because of Narcolepsy. You are awesome and you’ve got this

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So we allow the stereotype to continue that people can’t have jobs and be successful? How does that help?

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It helps us stay employed. My first neurologist who diagnosed me recommended that I not reveal my condition to employers. Sometimes I have sometimes I haven’t. Overall, he was right.

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I think it would depend on the type of medicine you practice. Obviously , to me, anything that has you taking overnight shifts would ruin your sleep hygiene. I’m a nurse with narcolepsy. I never had a problem telling my bosses about my medical history. They never seemed to mind, although they would say things like, “I know someone with narcolepsy, just take a pill and everything is fine.” I’m on xyrem, I love it. I want to take it every night for the next 30 years. (I’m 63 now).

I got through nursing school and looking back at the books, there are highlighter squiggles on every page, travelling off the side of the page. I’m amazed that I graduated. Although some people say narcoleptics aren’t completely asleep and can hear what’s going on. I don’t think its any different than any other sleep, so who knows?

I started having problems staying awake when I was a teenager. There are about 50 movies that I have never seen, because the music starts, and I pass out, and wake up when its over. Don’t ever tell your doctor you are so tired. I got every anti depressant known to make because to be tired, means depressed. I never thought to say “I’m so sleepy all the time.” I just said tired.

Get a good idea of any specialties you are interested in. A good day time schedule would work with many specialties or even GP. Maybe become a pulmonologist? You could be a great sleep doctor!

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melody baines
February 1, 2016 1:29 am

Thank You!! I see your taking xyerm. I have just been diagnosed. The sleep doctor has just got me started on meds.

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Hi Lee Ann, I’m also a nurse and I’m curious what type of nursing you do. I was doing rotating shifts when I was diagnosed with narcolepsy. Looking back, I had signs of narcolepsy and cataplexy during nursing school, but it wasn’t until my friend, who is a PA, gave a name for my muscle weakness as cataplexy, when I realized that I might have narcolepsy. I recently switched to an all day shift, no weekend job in the hospital, but part of me wonders if I could ever do rotating shift again. I would like to try my hand at ICU/ED, but am afraid I won’t be able to handle the schedule. Any advice would be much appreciated!

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I am an OR nurse with narcolepsy. I was diagnosed two years ago at the end of my senior year in college. I felt the same exact way and at first I kept it all a secret from my co-workers in fear of being misunderstood or losing my dream job. One day one of the other OR nurses openly brought up her narcolepsy and how she’s fine now because she takes medication for it. I immediately told her about my narcolepsy and she encouraged me to tell my nurse manager and a few others for scheduling purposes with only working days and not taking night call, etc. She disclosed her narcolepsy when she had her interview, while I did not. Either way, everyone was very supportive and did not judge us. I completely understand not wanting to be considered a liability as that’s exactly what I feared with working in the operating room. But with telling a few important people months after being hired, and after they were able to see that I can perform my job just like anyone else, I now have people that would support me if anything ever came up in the future regarding my narcolepsy and my job. If something ever did happen at work, and someone found out about my narcolepsy after the fact and tried to use it against me, I feel it would look a lot worse on my part for keeping it a secret from everyone. So now with that perspective, I’m glad I have a few people at work that know and that can support me. Also, my cousin is a med student with narcolepsy and is dealing with the same exact thing. She’s not comfortable telling others yet either. But there are a lot of us out there for support and I hope my story helps!

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NP facing same
January 31, 2016 5:49 am

As a Nurse Practitioner who also has narcolepsy, I have chosen not to disclose my condition to my employee. I also treat sleep medicine patients so I also have that experience, which has made me empathic and extremely understanding of the toll that narcolepsy can have on a patient’s life. It’s a tough decision to make whether to disclose or not…I wish you lots of luck in your medical career.

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Make your decision AFTER residency!

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As a doctor with narcolepsy, I have never not been forth coming with my diagnosis. It’s who I am. Narcolepsy does not define me but it is part of what makes me ME. It will never go away. I will have really bad days. I’ll also have really good days where I don’t seem to be “sick”. Medicine without having a chronic disease can be physically and emotionally exhausting. Look up all the research on physician burnout, and it starts during residency and continues on. Look at how many doctors are leaving primary care, or medicine in general because the balance of work and home life is not possible to obtain with our current health care system. Will you face opposition, sure, but you were going to face that anyway being a woman. There is still a bias towards male physicians wether we like it or not. Standing up and saying I have a chronic disease, this is how I manage it, this is how it makes me a better doctor will serve you better in the long run. Give the world a face of what narcolepsy really is. Don’t let the rest of the world think our disease is comical or what is portrayed in movies. I am an internist by training. I diagnosis more sleep disorders than many of my sleep specialty counterparts, because I take the time to do a good history, and I know what I’m looking for. I also work in academics where I have the ability to teach 500 students a year the importance of a good sleep history and what narcolepsy is. I want people to associate me with my disease and see that it’s possible to be successful, that it is possible to live a “normal” life, that really anything is possible. I’ve helped two students be diagnosed and get help, because they knew to come to me to ask about their sleep problems. I’m proud of what I have accomplished, and I did all of it while being a narcoleptic. We congratulate people who succeed despite cancer, MS, lupus, diabetes… insert disease name. Why not narcolepsy? Your challenges will be a little different in residency, but nothing you can’t handle. Be proud of who you are, I know we are.

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I love this reply. Though I haven’t had the courage to tell my employer I have a “sleep disorder.” Regardless of this, It took me 6 years to finish my undergrad. Not because I was not capable, but because I did not ask for help or truly disclose to anyone the extent of my sleepiness. Now looking back, I wish I would have spoken up. Maybe 6 years could have been 4. I most likely would have been able to make a schedule that worked for me, and not sleep through neuro.😵
Anyway, there may be stigma attached to N, but if it were me, I would want to be apart of a medical group (or at least my superiors), who were educated on sleep disorders. If the group could not understand that I am still a capable person, I would question if these are the type of people I want to surround myself with.
Be an advocate for the rest of us, or whatever specialty you choose. Who knows you may become the individual who has all the sleep patients sent to them like the individual in the previous post.

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I went through school with lots of medications stubbornness and caffein. It took much longer than it should. I was med free for years after school, part because of liver stress but mostly bc of health insurance Thought I was doing ok, but realize now the last 10 years have been a haze. On meds trying to piece together my unfinished business right and left. Finding a balance where I am able to work and have a social life, fulfilling obligations and expectations have been a challange. I wish in hindsight, that I would have kept my stress load down. I can not seem to recover

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My daughter too was diagnosed last year with narcolepsy. She is twelve years now. Thanks for the encouragement messages. I believe now she is not alone.

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If you can get through your residency, I think you’ll do fine! Just probably don’t go into surgery!

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Oh, and tell a neurologist resident! Or tell whoever you want. Your co-students could learn volumes of valuable information from you!

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When I hear of PWN becoming doctors and nurses I ask myself what am I doing wrong? Am I not pushing through my illness enough?

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Julie Flygare
February 1, 2016 2:11 am

Laura, Please remember than narcolepsy is not a one-size-fits-all diagnosis. Symptoms affect each of us to varying degrees and some folks find more improvement with medications and lifestyle changes than others. Your experience is still very valid and true. I believe that each and every person with narcolepsy deserves to feel proud for the invisible adversity they are overcoming daily. Keep fighting!

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Julie, Thank you for your insightful words. I remember going to our first Narcolepsy Network conference with my 13 year old daughter who has narcolepsy. One session was about careers, and the speaker was saying that you can be whatever you want to be. I thought, “well, no, my daughter cannot. She has severe limitations because of her narcolepsy. She can’t even stay awake in class, how can she study to become a doctor?” Over the past 3 years, she has amazed me. She has tried various medications, adjusted her lifestyle, and is now a straight A student, along with being involved with various extracurricular activities. She does not make excuses, but makes choices. She continues to be limited in her ability to fully participate in some activities, but she has made choices and set priorities. I am so proud of her and encourage everyone to pursue their dreams and passions.

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Michael Hennessey
February 1, 2016 3:26 am

I am 66 and have been fighting sleep problems since I was in grade school. I was diagnosed with Narcolepsy in 1991 after a 4 car pile up. I struggled all my life with life and going to doctors to get answers like ” you work to hard” ” We all mis miles of the road on long trips” etc. I now here the same thing when I talk about memory loss. Also for 3 years before I finally got hearing aids.

All of the above says be honest, first for yourself you need to keep reminding yourself you have a real problem. Second no one will really hear what you say. I would guess you might get statements like ” we all feel that way as interns” ” yes Residency is tough on all of us”. If you are real lucky you will have a mentor who hears you and says ok how can we make this work?

You may loose some chances but you will have respect for yourself and no nagging fear that someone may find out.

GO GET THEM! THE WORLD IS YOURS TO SET ON FIRE. Use Julie as an example. Look what she has accomplished in a very short time. If I was a lawyer who knew her story and came up against her. I would say oh crap this is going to be tough.😟

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As someone with Type 1 narcolepsy (meaning I have cataplexy) for over 25 years, I spent many years contemplating a career as an MD. With onset at 13 and diagnosis at 16 (1993), I was alone, fairly uninformed, and unsure for what having a diagnosis like narcolepsy meant for my future. I still meet mostly parents now with that concern for their children. An MD was not the career I chose after multiple soul searches spanning years, but rather a mix of clinical research coordinator, patient advocate and counselor (via Narcolepsy Network involvement and relationships with industry), and behavioral neuroscientist. And I’m happy.

I spent years tracking down physicians with narcolepsy, both before and after making a decision to not pursue an MD myself. I have learned the most about “physicians/NPs/PAs with narcolepsy” from talking informally with physicians who treat other physicians with narcolepsy — these conversations have always been anectodal and off the record. I have been lucky to create strong relationships with a good number of sleep doctors over the years, and this is in part due to my long history as a young researcher and later patient advocate in this field.

It is important to know that there are a size-able number of professionals treating patients who themselves have narcolepsy (MD, NP, PA). If I were to generalize, no specialty is off-limits with a narcolepsy diagnosis, however, I am always quick to modify that with a quality of life statement. One must be happy with their quality of life in any career path chosen. Hence, I have advised and consulted with others with narcolepsy on their way to choosing between MD and NP/PA, and it is a difficult and personal decision.

All this said, I haven’t ever connected with, or heard of a case, of a doctor with narcolepsy who shared the same personal circumstances preceding the decision that I faced in college — teen onset, with cataplexy, pre-career diagnosis, and wanting to pursue an MD. I do look forward to the day when I hear from one!

For parents of kids with narcolepsy, there are no general limitations to the narcolepsy diagnosis itself; however, early knowledge of the condition, and the fact that the kids will know the experience of being a patient for far longer than any career they choose will likely influence their career choice in some way. If they do choose medicine and treating others, they must dis-engage from their patient role and learn how to be both patient and physician in a complicated healthcare system. Ultimately, this combined experience will likely positively impact their careers and patients they end up caring for, but it is a learning process as yet unidentified with a guided process to help them through.

I fully believe that everyone, with or without narcolepsy, should find careers that they are passionate about. All careers have moments where decisions made will have influence over the future. The author is amidst one of those moments, and for her personally, it is a moment that will forever stand out as she is newly diagnosed (in a relative sense) and appears torn in whether or not to disclose to whom and when, in fear of potential negative outcomes. As narcolepsy is a lifelong diagnosis, though, there will be multiple times in her life, both professional and personal, when she will have to decide if and when to disclose. In each situation, she will learn more about what is best for her personally.

While I try to steer clear of too much advice giving, making a decision and sitting in it for a few months to ensure one is certain is one I have offered in the past regarding issues with disclosure. There are a few other ways to weigh the situation as well including identifying what she personally feels is necessary in order to remain authentic to herself. As mentioned earlier, overcoming the conflicts of experiencing the healthcare system as a patient and physician-in-training are not easy to sort out on one’s own. And each person experiencing both has different motivations and goals from these two roles. It is important for her to realize where on the continuum she would like to be. And recognize that where she is now will be different than 5 years from now.

For anyone contemplating a career in medicine with narcolepsy, or looking for advice, or willing to share their experiences (anonymously, if needed), feel free to reach out to me anytime at sknarnet@gmail.com.

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Lisa Matthews
February 1, 2016 5:05 pm

I understand where you are coming from because I too am often faced with do I tell or not tell? Then I remember that I am to be my own advocate and do not wish to be carted off to the hospital if I have a sleep attack nor do I wished to be slapped again if I have a cataplexy attack. Transparency for the most part has blessed me, even at work. (I too have recently finished grad school and switched careers so I get it) But if you ever need something like the ability to snooze it off, or have a flexible start time, it is best to be forthcoming. Failure to disclose and the unthinkable narcoleptic attack occurs, could possibly end your career before you begin. You have to give the hospitals a chance to be your support system.

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Another Narcoleptic nurse here. Good on you for sharing your story!
I found out about my Narcolepsy while I was at uni studying nursing. It made so much sense! So I told my teachers etc and they were supportive. But when I got to working in hospital I decided not to say anything for the all reasons listed. And, to be honest, I didn’t understand it enough myself. But I didn’t cope, couldn’t deal with night shift and so on. So I left shift work and now work only days in a GP clinic. I told my new employer about my Narc and they have been wonderful.
I think Narc is about the journey – you’ll mess up, you’ll stumble, people might get annoyed at you, but you will make it. My experience has taught me that my (work) priorities are myself first and my patients second. If I don’t take care of myself, I can’t look after them.
I wish you nothing but success on your journey =)

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hi
i am a physician wih narcolepsy, finished my medical school without medications and residency too but it was ouside usa, i have always been at the top 1% of my class untile i went to college, i didn’t do well as i used to but comparitvly i did well. my first cataplexy attack was after the birth of my daugter at 28, consulted few doctors who told me its just in my head.
after i was diagnosed i went into depression especialy because i moved to usa and now i have to do residency again !
for anyone out there who is thinking about surgery or any other residencies that is hghly demanding, if u r on med then u r fine in fact u will have less problems in satying awake at night when everyone else is strugling to stay awake. one more thing, in narcolepsy the more you work and stay active the better u feel the more you sleep the worse you get therefor i would not advise anyone to go to a residency program that need a lot of sitting quietly like pathoogy or radiology.

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Nicole Wilson
March 14, 2016 6:00 pm

The medical world still has much to learn about the realities of living with narcolepsy. I was diagnosed at 17 years old, almost 20 years ago now. Medication battle with insurance gets me down every beginning of the year. I constantly have to advocate for myself with a general practice medical doctor since Provigil/Modafinil is on a high abuse risk schedule. I can’t afford to see a sleep specialist anymore while I’m in school (again!) training to be an Occupational Therapy Assistant. I work days, study afternoons, and attend classes 5-9pm 45 minutes from my home. Life is challenging with narcolepsy but completely doable when there is understanding and supportive people around you. Never doubt yourself, or someone else will do it for you!

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Becoming a Midwife with Narcolepsy
March 17, 2016 4:27 pm

Hi, first than anything, sorry if my English isn’t very well, I’m still learning the language, I´m a Spanish speaker.
I’m from Chile and I’m studying to be a midwife, I really love the profession; that’s why a choose it. I was diagnosed with narcolepsy since 8 months ago. Just in the middle of my practises: and for me was like: “ok” I’ve been living with this since a wild, so I now I can, even without medication was hard but I can. I think than with medication this would be so much easier; and being woken up it is.
But is the only who star to be easier; socially, everything chance just because my “chronic sleepiness” have a name, when my teachers, mattes and family think I was loose, if I have a sleep attack was fine for them, because I was normal. But the diagnoses chance my life in so many ways because people are scared about who doesn´t know. Everyone I know stars to fill in the right to question if I have the right of keeping studying.
My college star to questioned my abilities harder than before, if for every student being “good” was fine, I have to be “almost perfect” for being acceptable; or in the opposite way some of my teacher say “I really didn´t have no expectation about you” so for them just with try was lie “it´s ok, she is illness we wait more for them”. So when I read you say that “my narcolepsy, I was forced to learn the extent of my own resilience and determination” I get it, and I really think ok, it’s not just me; we fight more than everyone understand because it’s not just the illness, no. It’s the social punishment for being ill. I´m narcolepsy, and you know what? Everyone knows it, and because of that I live scared about my university calling an “Ethical commission” to decide if I have the ability, courage and energies to keep studying; or even worse maybe I will never get a job when I will graduate, because people know it.
They say because of narcolepsy I put patients in danger; but I know isn’t true; because that is something else than narcolepsy push me to step up: my ability to self-criticism.
So keep fighting, change the world, you know you can. Just never allow anyone to question your skills to be a doctor; that’s it’s something who only you know it.
Narcolepsy scares as a shout to everyone, yes. Makes a few things harder to naps, you could be sure, but it does not define us.
Mari

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MD with narcolepsy
April 19, 2016 4:13 pm

Dear Medical Student,

I was so heartened to read your post. Narcolepsy is a very personal thing in how it affects one life so I will not superimpose my experiences on yours but please believe me when I say, your words bring back memories of how I sought to reconcile a mind capable of learning medicine but not awake enough to practice it at times.

I was diagnosed in medical school right soon after second year and it was a bombshell. I will not belabor the details but it led me to road I think you have traveled. The first few miles of it are surprise, then a happiness of knowing you can now be awake for at least 50% more time than you ever thought possible followed by a slow realization that you still may face limitations to what you can and cannot do because of a disease that no one can see, few can relate to and does not cause physical death but can cause the alteration of life-sustaining dreams and goals. It is hard to come to terms with a neurological disorder that leaves your intelligence intact and that at times prevents you being awake enough to cultivate it.

Narcolepsy seems to me to be a deeply personal experience. It is often diagnosed just when we find out who we want to be, what our life’s goals are or later when we have set out on a course in life that is very difficult, if not impossible, from which to deviate. I can humbly suggest a few things…

1. Ask your physician does he/she treat other physicians with narcolepsy. Mine has had a few. Ask what specialities they are in, how well they are doing, do they need accommodations, what if any challenges he/she has found they mention and how they have overcome them. From my experience, most of them are in specialities where they can tightly control their schedules and not are doing shift work or overnight work.
2. Be kind to yourself. You will need to be able to remember that you are not like everyone else and it is okay. I remember the thrill of staying awake enough to do clinical rotations and the classwork and thinking that the ability to perform at that level meant that I knew I what residency would feel like. However, the grind of trying to survive 30-hour shifts in the ICU while you are the one truly responsible for the patient, not just the rotating medical student, is very different than medical school. By the grace of God, I made it through four years of residency and fellowship performing well clinically without accommodations being made but it took extra provigil, caffeine to the point of tremors by AM rounds and missing out on everything other social aspect of my life to do it. I would cry in the shower as I went to the hospital knowing I was on my fourth overnight shift in a row and feeling such a sense of dread. I was running on empty and wishing I was not me but something “better” or someone else. So when you feel you wish you were like other people and perhaps wish you were different, be kind to yourself and ask how many people can actually do what you are doing, even in good health.
3. Consider telling your residency director about your diagnosis. During the application process and the match, I think you are safe in keeping your diagnosis to yourself if narcolepsy has not prevented you from fully functioning, unencumbered by the limitations of the disease as a medical student. If you are in any doubt, consult an attorney who will let you know what you need and don’t need to disclose depending on what the program is asking regarding your health history. This is not so you can look for a legal fight. It is to make sure you are maintaining your honesty and integrity while protecting your health information. However, the week before I began my training, I told my residency program director about my diagnosis and during the rest of my training, I casually let folks know about the diagnosis. Soon folks knew I wasn’t rude when I fell asleep in dark lecture rooms during powerpoint presentations…I simply had a sleep disorder. If I fell down, I didn’t need a rapid response called, it was just cataplexy (mercifully has only happened once at work).
4. Having children can be a challenging proposition for any resident/attending let alone one with narcolepsy. If you are a female and plan on having children, ask yourself do you plan on having them in residency and if so, do you plan on stopping your medications during any point. There are very limited studies regarding many of these drugs especially the newer agents of Nuvigil and Provigil. Xyrem seems to have a better side effect profile in animal studies but many physicians simply recommend stopping them during the time you are trying to conceive and at times, the entire pregnancy. Do the pubmed literature search and you unfortunately will discover there is limited information regarding studies related to this topic. I did not find out about this until too late and unfortunately, will likely never have children as I am not in any financial position to simply not work for nine months and my spouse is understandably worried about the consequences to the fetus with such medications. You can certainly elect to continue to take them but without knowing their full risks, mothers are often reticent to do this, so please consider this when you are planning your residency and career.
4. If your family is supportive, consider, if feasible, doing your training closer to them. When you are completely drained and sleepy from having done an endless night in a SICU or MICU or if you been up all night reading trauma CTs during your overnight radiology shift, it is kind to have a meal a loved one brought over, or someone to spent time with who is simply happy to spent time with you even if it means you are taking naps through half the day.
5. Continue for other doctors and health care providers to know precious little about your disorder. Physicians are relatively in the dark about the disease. Often you may be told it is “wonderful” to be able to sleep like you do, often not knowing that poor sleep quality and disrupted sleep are also hallmarks of the disorder. It is annoying in medical school, frustrating in residency and by the time you are an attending, baffling that few in healthcare seem to know what narcolepsy entails.

The bottom line is it is wonderful to hear the spirit, courage and tenacity come through in your writing. It brings a smile to my face and takes me back to the moments where I was determined to tell the world I was going to show what a person with narcolepsy could achieve. I am a Christian so I credit what I accomplished through the strength and grace Jesus gave me and a supportive loving dad who encouraged me throughout . However, regardless of faith persuasion, it is amazing and thrilling to see the results of what grit, dedication, love of patients and career calling can bring. I applaud your progress so far, wish you nothing but the best and pray that as you plan your path, your achieve the career goals for which you are striving.

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