Facebook Twitter You Tube
Lupus has many voices.  Add Your Voice »

Pennsylvania

LFA, Philadelphia Tri-State Chapter
(215) 517-5070

Kelley
Diagnosed at 25
Lupus is a disease that affects all the organs in the body and complicates every treatment. I have unusual reactions to medications because of my Lupus. As I get ...
View Full Profile
Judy
Supporter
Its an autoimmune disease that cause damage to any body organs. Take many years to diagnose. There is a need for research to get answers and treatment. It need to...
View Full Profile
Jamie
Diagnosed at 22
I want others to know how unexpectedly and severely ill people with Lupus can become without much warning. I want people with Lupus to know that having health insur...
View Full Profile
Debbie Lyn
Diagnosed at 48
Just because we don't 'look sick' does not mean we aren't. Just because I made plans for something and was excited to do does not mean when the time came, I was in ...
View Full Profile
Charlene
Diagnosed at 38
Even though I have Lupus, it doesn't change who I am. Yes, I have good and mad days but I have to keep going no matter what and so can YOU!!!
View Full Profile
gbuonfigli
Diagnosed at 38
I survived endometrial cancer, as painful as Endo and fibro are this past year with lupus is by far the most pain I ever felt. Exhausted all the time. Its harder on...
View Full Profile
Sandi
Diagnosed at 44
I would like others to know that Lupus can be a daily, chronic, life long struggle. Lupus is not something that 'shall pass' as many people like to say to comfort s...
View Full Profile
Diane T711
Diagnosed at 45
It's real, it hurts and it never leaves. Please don't doubt anyone's illness just because "THEY DON'T LOOK SICK".
View Full Profile
Tanya
Diagnosed at 36
I want people to know that lupus is different for every person. But what is consistent and holds true for everyone who has it is this: it can be all together consum...
View Full Profile
MaryPhila
Diagnosed at 40
Lupus is not as nice as having cancer which you can cure or it kills you fast,6-18mo. Lupus just declines the quality of your life continuously dragging it out over...
View Full Profile
Sharon Cul
Diagnosed at 58
I guess.... to not give up if you don't feel well. If you know something is just not right with you. It took my doctors 3 to 4 months to get a diagnosis of Lupus. ...
View Full Profile
Jeff
Supporter
I really don't think people fully understand the complications of Lupus or how it affects the body. They see you as a normal person but usually you are in some typ...
View Full Profile
Pa-Vic
Diagnosed at 28
Living with Lupus is not an easy thing it is a daily challenge with so many unanswered questions .. In my case it seems just as I think I have gotten this under con...
View Full Profile
Monica
Diagnosed at 33
I have stupid lupus, as I call it, but, it don't have me. for over 21 year's. but, I deal with it, I don't let it get me down, I get out of bed each and every day ...
View Full Profile
Gabrielle
Supporter
I want others to know that even with lupus, there is hope - hope in Christ. There is so much beauty in this world, and it is by and through my lupus that I have bee...
View Full Profile
Harley
Diagnosed at 42
For me, it started with vasculitis on my feet and ankles. {big sores} My feet blew up to like parade floats. I was very lethargic, and my joints hurt.. Then one aft...
View Full Profile
neashea
Diagnosed at 39
Lupus is a very painful, life changing , depressing disease that sneaks all types of illnesses into your life. The disease swells everything on my body when it flar...
View Full Profile
Priscilla
Diagnosed at 40
You can feel good one day and feel like death the next. I wish people would stop saying well you look good. I be feeling terrible. I just say don't critic of us. Lu...
View Full Profile
Niya
Diagnosed at 36
Lupus is not a death sentence! Thank God for that :) You can still have as much normalcy in life just as anyone else. Although, you may feel tired and in pain, you...
View Full Profile
Melissa
Diagnosed at 45
I am not a constant complainer. If I complain it's because I just can't take anymore. No I am not tan. I have Lupus which causes my face to appear to like I am sun...
View Full Profile
Angielin G
Diagnosed at 20
After dealing with my father's tumor fiasco I started showing symptoms. I started slowing down physically and mentally. I felt that my joints needed some oil. It wo...
View Full Profile
Quan
Diagnosed at 24
Two years after having my son I started getting crazy symptoms. I began to swell in all my joints, my sight would go black, I lost hearing in one ear and couldn't f...
View Full Profile
Aleaha
Diagnosed at 30
Lupus does not discriminate. So many suffer in silence, afraid of what the future might hold, yet battling each new day.
View Full Profile
Nicole
Diagnosed at 26
It's not "just Lupus". It's not being able to play with your kids because you're tired. It's missing work because the pain is just unbearable today. It's calculatin...
View Full Profile
Tracey
Diagnosed at 17
I want everyone to know that living with lupus is manageable. Take care of yourself by listening to your body when it tells you it is tired, and by taking your medi...
View Full Profile
Kiki
Diagnosed at 28
It can take very long time for a diagnosis. It took 10 years for me. I thought I was crazy or dying every night I went to bed. Somehow I made it through life thi...
View Full Profile
Christina
Diagnosed at 14
Life can still be wonderful after a Lupus diagnosis.
View Full Profile
Finnlee
Diagnosed at 27
Lupus is a very challenging disease to diagnose. At least it was for me. Since the symptoms were ever changing, I was thought to be a hypochondriac. I knew though t...
View Full Profile
Jenn
Diagnosed at 25
Lupus is a serious illness, leading to organ damage, loss of employment, disability, and even death. Please support awareness and a cure!
View Full Profile
Travis
Diagnosed at 16
Lupus is not very pleasant to live with, at age 16, I was diagnosed with S.L.E., and I can tell you from the 8 months I've lived with it, its a very serious disease...
View Full Profile
T. lockard
Supporter
It's a "chronic" disease that affects mostly women. And it's usually diagnosed during child bearing yrs. ...It's extremely difficult to live with, & the simplest ch...
View Full Profile
map
Diagnosed at 53
I would like others to realize Lupus is much more devasting than what most of the public think it is. Although the effects of Lupus can be as wide ranging as those...
View Full Profile
Gina
Diagnosed at 40
Since I was told by my doctor.lupus has changed me dramatically .live with pain unable to walk like I used too I fight everyday .my words for all .there is someone ...
View Full Profile
fighting
Supporter
NEVER LET LUPUS GET THE BEST OF YOU SOME DAYS YOU MAY GET REALLY SICK AND DICOURAGED BUT DONT GIVE IN TAKE CARE OF YOURSELF AND DONT BE AFRAID TO ASK FOR HELP SOROU...
View Full Profile
wolfmom77
Diagnosed at 26
Lupus really is the great imitator. I may look fairly healthy but there are times I just want to stay in bed and not move. In fact, there are days I've had no choic...
View Full Profile
Emily
Diagnosed at 18
Lupus touches everyone involved in your life. This is a chronic disorder that simply doesn't get better and go away; once diagnosed it is a matter of learning to l...
View Full Profile
Rose68
Diagnosed at 40
I want other to know that people can have a silent illness. Just because someone looks fine does not mean they are. Every person is different. Every person feels pa...
View Full Profile
M Jackson
Diagnosed at 14
I always like to let people know that I have "Lupus" but " Lupus " does not have me. Lupus is a master of disguises. One moment it has on a nice face and the next m...
View Full Profile
CBerger
Supporter
You don't have to let Lupus controll you. Learn all you can about the condition, recommended foods to eat, not eat, excerise when you can and stay in constant conta...
View Full Profile
Chrismiss
Supporter
Lupus isnt a foreign word to me since I have been made keenly aware of the illness going back over 35 years. That was when my older sister Rose Mary was diagnosed w...
View Full Profile
AliFaye
Diagnosed at 19
Having Lupus is fighting a never ending war against the very things that keep you alive. You go to bed every night praying that when you wake up in the morning, the...
View Full Profile
loopy love
Diagnosed at 31
Lupus is a life long disease. Always listen to your body, so many doctors disregaurd this disease or pass it off for something else. Get a rhematologist that listen...
View Full Profile
stauby07
Diagnosed at 16
Lupus is much more devastating than people may think. I was on chemotherapy for almost 3 years to take away the 17 tumors that were caused by the disease in my lun...
View Full Profile
JGrafton
Supporter
My mother has had lupus for about 16 years now. A lot of people do not know Lupus or think it’s not that serious, and neither did I until I started getting involved...
View Full Profile
Brianna S
Supporter
Honestly what I want others to know about Lupus is that I want others to know about Lupus. Lupus is so overlooked as the chronic illness it is and I believe that if...
View Full Profile
jstrong
Diagnosed at 57
I was lucky, I was diagnosed before I had serious complications. My advice - if something feels off to you, pursue it don't let a dr. blow it off. Keep trying unt...
View Full Profile
gloria
Diagnosed at 40
It is a devastating disease that can affect all aspects of your body. It can change your life physically, financially and socially. The doctors are just now startin...
View Full Profile
Robin
Diagnosed at 41
People think just because they can't see that you're suffering and in pain that you're faking it. I am in pain almost every day, some days are worse then others. I...
View Full Profile
Karen
Supporter
Know that Lupus, like other diseases, needs your help in finding a cure. Past the word along to others,volunteer your services to help at your local chapter or take...
View Full Profile
Ericka
Diagnosed at 16
I have been living with lupus for over 12 years. I was 16 years old when I as diagnosed. I didn't kno what lupus was or what it affected. Luckly my PCP was on top o...
View Full Profile
Deb
Diagnosed at 32
People are always shocked that I had two angioplasties and a cardiac stent by the age of 36. I’m told, “You look too young.” And that’s the point – it’s not norma...
View Full Profile
Shanitha
Diagnosed at 31
Just because I appear fine today doesn't mean I won't be bedridden tomorrow. This doesn't go away.
View Full Profile
Marcia
Supporter
My sister lived with lupus for six years, until her body couldn't resist it anymore. She was 29 years old. It was very difficult while she was sick and it required ...
View Full Profile
Joyce
Diagnosed at 33
If someone with lupus appears to need help don't ask them if they need help just help them. Mow their lawn, take out their garbage, fold the laundry because it does...
View Full Profile
Jyneal
Diagnosed at 36
We are not just lazy. Stop and ask we might just be in a lot of pain or over tired.
View Full Profile
Taraja
Diagnosed at 15
Lupus is an auto immune disease that to this day there is no cure. And doctors can't even tell you how you got the disease. Yes, its not life threatening and there ...
View Full Profile
Michelle78
Diagnosed at 21
I would like to bring more awareness of this life altering disease. The lack of public knowledge forces those of us with Lupus to suffer in silence. I want others t...
View Full Profile
Rabbcheck
Diagnosed at 38
how difficult it is to diagnose
View Full Profile
BareccaBoo
Diagnosed at 23
It's definitely a chronic disorder of many faces and struggles, each individual to each diagnosis. It's hard to tell you what's coming. Lupus is like a snowflake...
View Full Profile
Alexis27
Diagnosed at 24
Lupus is a life altering illness that will take the patient and their loved ones by storm. But, with acceptance, education, and support it will change your perspec...
View Full Profile
Catherine
Supporter
I was diagnosed when I was 24 years old. I had been seeking medical help for multiple ailments I have for more then 10 years prior to being diagnosed You are your ...
View Full Profile
michelle
Diagnosed at 46
lupus hit me hard at age 46.didnt know anything about it.it affects all organs,very painful,sleep most ttimes,have cognitive problems,has changed so much in my ...
View Full Profile
T.B.L.
Diagnosed at 60
Lupus is what I call a "life Limiting Disease." It curtails normal, everyday activities, & makes one aware of "conserving one's energy. ...So frequent naps (when ne...
View Full Profile
Allison
Supporter
Support is one of the best gifts you can give someone. No one wants to be alone, especially when they're in pain.
View Full Profile
Meghan
Diagnosed at 31
The hardest part of living with Lupus is never knowing what tomorrow will bring.
View Full Profile
Songbird66
Diagnosed at 21
I WAS DIAGNOSED WITH S.L.E. WHEN MY SON WAS JUST 5 MONTHS OLD --- I DID NOT HAVE ANY IDEA THAT I WAS SICK AND DYING - BUT FORTUNATELY FOR ME I WAS LATER BLESSED BY ...
View Full Profile
Lynn
Diagnosed at 38
Treatments. Real life stories
View Full Profile
Yolanda
Diagnosed at 40
I was diagnosed on my 40th birthday after several months of not feeling well. I was told that I was getting older. No so! I live with lupus everyday, I have lupu...
View Full Profile
Kayla
Diagnosed at 17
It's a serious disease... It changes lives drastically!!
View Full Profile
sgleason09
Supporter
Lupus treatments have come so far! Imagine the break throughs there would be if we could raise more awareness!
View Full Profile
Heidi
Diagnosed at 50
I was diagnosed only recently but I've been living with the symptoms for years. Auto-immune diseases run heavily on both sides of my family. If a friend or family m...
View Full Profile
jodybabiie
Supporter
I may look fine on the outside, but on the inside is a different story.
View Full Profile
Lisa Marie
Supporter
Learn all you can about Lupus and SPREAD the word.Letting people know you have Lupus is not easy. For this is a illness that can not be seen, and if people cannot s...
View Full Profile
Bealine64
Diagnosed at 24
Lupus Is a illiness you can't see! You Look fine on the outside to others but Hurt Like heck on the inside. And people are very unaware you have it! but the Pain an...
View Full Profile
marissa
Diagnosed at 32
I want everyone to know about lupus and that it is a serious and devastating disease. I think certain websites down play how hard even people that are considered t...
View Full Profile
shennee
Supporter
We must stay positive and support each other every day. Awareness is Key.
View Full Profile
Denise
Diagnosed at 31
This is the hardest thing I have ever done cause I hurt so bad all the time. I went 3 years without being diagnosed. It was so hard for me to get insurance, and my ...
View Full Profile
Minnie
Diagnosed at 28
I've learned not to let the symptoms get the best of me. Yes, I hurt. Yes, I get exhausted easily. And, yes, there are days when I would rather just stay in bed....
View Full Profile
Kimberley
Supporter
Just because you look well doesnt mean anything. You suffer every day and try to get through. I would like people to know that more research needs to be done to hel...
View Full Profile
Nancy S
Diagnosed at 56
I was diagnosed just a little over a year ago, but had symptoms for the past 20 years. No one every put two and two together. I rarely had any "sick" days because...
View Full Profile
Amy
Diagnosed at 25
You wouldn't know I have lupus by looking at me or talking with me but it is in every decision I make.
View Full Profile
Debra
Diagnosed at 43
You can have Lupus and it doesn't have to have you. When I was diagnosed, I felt alone, but its not true. You have family, friends, and great websites to help yo...
View Full Profile
Stephanie
Diagnosed at 30
It hurts. It's a silent disease. It is not curable. It is managable.
View Full Profile
Jennifer M
Diagnosed at 32
Continuous, unconditional support from family & friends is critical to the well being of every Lupus fighter. This is a chronic, long term war we are battling, and ...
View Full Profile
twinsgirl
Diagnosed at 31
Lupus is a hroni disease but you an live with it. Sometimes you may be depressed or down but you can't let it get to you.
View Full Profile
Lupie Jodi
Diagnosed at 38
I would like others to know that Lupus is just as confusing to us that have it. How this desiease is the most Controlling force I have ever encountered. Demanding m...
View Full Profile
Dionna
Diagnosed at 15
Lupus is not a death sentence. It is not impossible to live a full life. At the same time, it is not the easiest thing to live with. Constant appointments, cocktail...
View Full Profile
heidizme
Supporter
People always say you "Look ok", or you look "better today", you never feel that way on the inside, you always feel terrible.. its very hard to live with...
View Full Profile
Sandra
Supporter
Lupus is a disease that can affect not only your life but the lives of your love ones.
View Full Profile
Kristine
Diagnosed at 35
Lupus has made life much more challenging for me, but has also forced me to look at life much more differently. I am more positive now, I stop and appreciate the l...
View Full Profile
Cindy
Diagnosed at 24
Lupus hurts everyone. My family suffers with me every time my lupus flares.
View Full Profile
STEPHANIE
Diagnosed at 35
Lupus has completely change the way I live.I was diagnosed at age 35.I was a very health person and physically active with my family.One day, I awaken with a rash a...
View Full Profile
Angela
Diagnosed at 45
"I have Lupus, but Lupus does NOT have me!!"
View Full Profile
Carla
Supporter
There is not enough funding for research for new treatments and hopefully a cure for lupus.
View Full Profile
Bo Diddly
Diagnosed at 58
Lupus symptoms are unpredictable and varied. A person with lupus can be feeling ok one minute and need to lay down the next. When a lupus patient fails to make appo...
View Full Profile
YRyant25
Diagnosed at 19
I want others to learn about living with lupus.
View Full Profile
AMCKIBBEN
Diagnosed at 34
I want them to have the knowledge of Lupus. When people ask what is Lupus it's hard even for me to explain it to them what it is because I'm new to the disease myse...
View Full Profile
Desiree
Diagnosed at 26
Its a life changing disease. Has caused my family many scary nights and days. Finally a new medicine has emerged for us after 50 years.
View Full Profile
Holly
Diagnosed at 31
How it affects the lives of everyonearound the person that is sick. Also, how it affects the person with the disease. So many people don't understand it. I know p...
View Full Profile
driar
Diagnosed at 20
I would like others to know that Lupus is not a joke and many people suffer needlessly because of this disease.. i would like a cure to be found so we cannot the pa...
View Full Profile
Brandy
Diagnosed at 26
Life with lupus is hard. It changes you. You can't be the same person you were pre-lupus. The disease makes you learn your limits and appreciate each day, each stru...
View Full Profile
NancyK
Diagnosed at 45
More often than not, those of us with lupus usually look "healthy". It is quite common for others to forget/dismiss the limitations that accompany a lupus diagnosis...
View Full Profile
Ricarda
Supporter
It affects everyone else differently. Take charge of your medical care!
View Full Profile
Juanita
Supporter
It took 2 years for me to get diagnosed. In that two years I was still working and suffering with pain and severe fatigue. I finally went on STD which has helped ...
View Full Profile
T.F.N.L.F
Diagnosed at 30
THAT LUPUS CAN GO UNDETECTED SO PLEASE GET TESTED. ALSO IT DOES NOT HAVE TO BE HEREDITARY, BECAUSE I AM THE ONLY ONE IN MY FAMILY WITH LUPUS.
View Full Profile
Kay
Supporter
I find the best way to manage this disease is through diet,exercise,proper rest and managing stress. Stress can be managed by meditation exercises and yoga can help...
View Full Profile
tina
Diagnosed at 25
alot of people dont know that lupus even exists. i would like people to be made aware of the disease.
View Full Profile
Stacy
Supporter
A lupus diagnosis puts priorities into perspective in terms of not letting your life pass you by. Though restricted in career choices or recreational activities, yo...
View Full Profile
Kim
Diagnosed at 7
People with lupus are not suffering from the disease; they are living with it. We can do almost anything a person without lupus can do and only occasionally may ne...
View Full Profile
Carolyn
Diagnosed at 47
NEVER GIVE UP I was officially diagnosed at 47 but at 39 I had a pcp say they thought I had LUPUS. The specialist said I was just working too hard quit my job......
View Full Profile
Ali
Supporter
It is debilitating at times... It requires 24/7 commitment from the patient, and their supporters.
View Full Profile
funnyfarm
Supporter
My body may appear to look like a regular person from the outside, but within the confines of my own body lies a battlefield of wounded organs, joints and one very ...
View Full Profile
Tyeshia
Diagnosed at 15
Lupus is a tuff disease it affects you physically,emotionally,and mentally because your lifestyle will change and you will have to be strong enough to adjust.
View Full Profile
carol
Diagnosed at 53
Even though I do not look sick..I am..but I will not quit...I will do all I can to be all I can..
View Full Profile
Jenn
Diagnosed at 36
Every day is a challange and even when we don't look sick we may still be struggling. There is only so much energy for each day and certain activities that just can...
View Full Profile
Gail
Diagnosed at 40
Do not get frustrated if you are having lupus symptoms and newly getting treated, there is a help out there and alot of support!
View Full Profile
Cynthia
Supporter
Living with lupus is a daily and sometimes hourly challenge. Living with a disability like lupus means that most people have no idea what I am contending with, oft...
View Full Profile
Cynthia
Supporter
Living with lupus is a daily and sometimes hourly challenge. Living with a disability like lupus means that most people have no idea what I am contending with, oft...
View Full Profile
TONI
Diagnosed at 46
As you can see, sometimes the age of diagnoses can be later. If you believe something is wrong with you, and you know your body well, insist on the test for Lupus. ...
View Full Profile
TBFoxRDMS
Supporter
You're not lazy. It's not your fault you can't get off the couch. You have lupus.
View Full Profile
Kathy
Diagnosed at 41
Fatigue is unbearable for lupus patients. Without enough rest we will crash. There is pain, stiffness, seizures and rashes. People cannot comprehend the limits that...
View Full Profile
Latasha
Supporter
My mom was diagnosed with Lupus when she was twenty two years old. She was a young single mother at the time, and she spent many days in and out of the hospital in ...
View Full Profile
Andrew
Diagnosed at 21
Most people around my age have experienced the side-effects of a hangover after an ill-advised night of drinking/partying. Nausea, headache, body aches, fatigue, et...
View Full Profile
Mic
Diagnosed at 24
Living with Lupus is hard every day but a postive attitude goes a long way in dealing with it. listen to your body!
View Full Profile
Mindy
Diagnosed at 18
I want everyone to know that Lupus is incurable, and hard to live with, but life is tolerable and bearable because there are so many good and blessed things in life...
View Full Profile
Melissa
Diagnosed at 28
It does not have to be the end of you!! You can live your life and accomplish all of your dreams with the proper medical care and support system!! You may have Lupu...
View Full Profile
Allison
Diagnosed at 21
Lupus is NOT always a death sentence. Be strong and fight through everything. You have so many people supporting us!
View Full Profile
RoseR
Diagnosed at 39
1)Lupus does not just affect you, it also affects all of your love ones. 2)You can live a productive live with a diagnosis of lupus. 3)EDUCATION IS THE KEY
View Full Profile
cindy
Diagnosed at 35
You never know what to expect, I have never known what it has felt like to ne healthy. so I live my life with what god has has given me.
View Full Profile
Duane
Supporter
Lupus is not just skin rashes, achy joints and fatigue. Lupus can be disabling and life-threatening.
View Full Profile

Return to All Profiles page

Pin It