tina
President & CEO

Tina Armitage
President

My name is Tina Armitage and in 2010 my world was turned upside down.  I went to the doctor and heard the diagnosis everyone fears.  You have a genetic disease that there is very little treatment available, and there is no cure.  I just sat there dumbfounded.  My diagnosis was Systemic and Discoid Lupus Erythematous, Hashimoto’s Thyroiditis and Fibromyalgia.  I am normally very inquisitive by nature, but I was just at a loss for words.  The doctor suggested some more detailed tests to determine severity of disease to determine a course of treatment and handed me a stack of scripts that I needed to start taking immediately.  So I left the office in a bigger fog than I entered in and walked in the rain to my car.  I sat in the car for a few minutes but before long starting thinking, “am I going to die?”  I had just lost my mom to the big “C” and my dad was still reeling from that.  How do I call him and give him the news that his daughter might be next.   I decided to call my sisters, Karen and Andrea, to meet me at Andrea’s house right away that I needed to speak with them.  When Andrea asked me what was so important I said where I was and that I was just diagnosed with a disease called Lupus and before I could get it all out, I was hysterical crying.  You see, I am a strong person and I have a wall that I put up for just such occasions that keep me from letting anyone see me hurting, but that wall doesn’t work with my sisters.  My sister said come right here, I will get Karen.  You see Karen has worked in a hospital for 15 years and in my family, that means she is in charge of all things medical.   After what felt like forever, the tears were done and I drove to my sister’s about five minutes away.

By the time I arrived, Andrea had the coffee on, google search powered up and the Lupus Foundation’s webpage opened and she started reading off the horrifying stats for Lupus.   It seems that 15% of women diagnosed with Lupus die within the first five years of diagnosis.  So my sister in her typical fashion says, well, you have already been sick for over two years so you just need to hold on for a little longer, your chances go up tremendously.  In my typical fashion I said or I only have three years left.   With that, my dad walked in and said, hey, how did you make out at the doctors?  By the look on our faces he knew it wasn’t good news.  So I tell my story of woe again but without the tears so as not to upset him.   He looks at me and says, Tee, you are young and up until recently have been healthy.  You need to believe that we can get a handle on this and beat it.  He said they come up with new cures and treatments every day and I need to be positive and fight.  He said, you are a tough woman and have never let anything hold you back.  You need to decide you are not going to let Lupus win.  So I promised to do whatever the doctors say, look into clinical trials and whatever other tools were available to me.  We scoured the net trying to find the best doctors in New York and the world and see where the best treatments and trials were being held.    I took a few days off to deal with my diagnosis and set up a plan of attack.  I was going to beat this.  If nothing else, just to spite all the negative information on the net.

 

There ended the positive outlook for quite a while.  You see, I wasn’t being completely honest with myself or anyone else about how bad I was really feeling.  The thing is Lupus did not just magically appear one day.  In retrospect, I had symptoms from when I was a child.  I had leg braces as a baby, but never had a reason for needing them.   I had tons of painful dental issues going back to my baby teeth.  The dentist said I took after my mom.    I had terrible ear infections.  The doctors attributed it to the fact I was a swimmer and diver.   In high school, I had constant infections which the doctors called yeast infections that would get so bad that the skin peeled off under my arms all the way down to my waist and along with becoming a woman, I had constant horrible urinary, bladder and yeast infections.  I had a sore on my face the doctor called a dribble stain, would appear, get better, go away and come back.  My weight and blood pressure would dramatically rise and fall.  The doctors attributed this to puberty and white coat syndrome.   During my freshman year, I was exhausted all the time and needed to nap when I go home every day for six months.  Doctors attributed that to the stress of starting high school.  Then for years, absolutely nothing until college.  One morning I woke up and had excruciating pain in my left knee.  Once again, mom took me to the doctors and they could not give me a reason for the pain.  This pain began to work its way through my leg until it got to the point that I could barely stand on it at times and the pain radiated from my hips to my toes.  My mom brought me from doctor to doctor because none of them could find a cause.  Finally, after my nana insisted I go to her orthopedic, they discovered a slightly herniated disc.  Knowing what I know now, that should not have accounted for the level of pain, but whatever the doctors said was gospel back then.  There was no internet to double check their conclusions or compare my symptoms with all known diseases.  For several years, I went to dozens of physical therapists, doctors, acupuncturists and chiropractors.  Nothing they did relieved the pain.  Then one day, it just disappeared.

 

I went on with my life.  I graduated from high school and trade school for court reporting.  I became a court reporter and hated it and my back and legs started bothering me again but not nearly as bad as the previous episode.  The doctors attributed it to carrying the heavy stenograph machine on the bus and through the streets of New York City.   Again, I went through all of the treatment for a back injury with no decrease in symptoms.  Fortunately, I was still under my dad’s insurance because as a freelance court reporter, I had no benefits.  I hated being a court reporter and the thought of not having benefits or paid vacations, sick leave, 401ks etc. only added to my dislike of my career choice.  I began to take temp positions are different companies in search of the perfect career.  I had a strong desire to be successful and set upon the journey of finding my second career and in 1994, I did just that.  I took an indefinite temp positions at one of the best brokerage houses on Wall Street, Donaldson, and Lufkin & Jenrette.  The first time I stepped on the trading floor, I was breathless.  I was in love.  Without a doubt I knew that this is what I wanted to do for the rest of my life.  So I, my high school diploma and certificate in court reporting were going to become a broker.  I knew I needed to really want this because forget the fact that I didn’t go to a real college, I was a woman trying to make it on Wall Street in the 1990s.  Well me and Melanie Griffith.  Thank God my mom’s theme song was “eye of the tiger” and she played it constantly… lol  Also, I watched working girl one to many times, worked 12 to 15 hour days for three years, worked a second job bartending to make ends meet and despite everything, I did it.  In 1997, I was offered a position on the Mortgage Backed Securities desk for Garban LLC.  I was over the moon excited.  I felt like I was finally getting my dream job.  Unfortunately, once again, a mystery symptom popped up.  I was only there for a couple of weeks.  I was at my desk training and all of a sudden, I started having a terrible pain in my jaw.  Since I was only there for a short time, I did not say anything, but before long a trader turned around and said what happened to your face.  I said I don’t know but my jaw is killing me.  I went to the bathroom to the mirror and was horrified.  My face was swelling up very quickly.  At the time, I had a good friend that was a dentist and he agreed to take me as soon as I could get there.  It took me over an hour and by the time I got there, I was almost unrecognizable.  He took a look in my mouth and said two of my back teeth were massively infected and I needed surgery immediately.  He got me into an oral surgeon who removed the teeth and placed a drain that removed the infection down my throat.  By the time I got home I was incoherent and my sister and brother in law came and got me and brought me home with them.  I do not remember anything until the next day.  I scared the heck out of them.  About a week later, I got a little better but the dentist was never able to explain what happened.   In addition, I was tired all the time, I had unexplained pain, was nauseated and vomited all the time and lost a lot of weight.  I couldn’t understand what was going on.  I was working out, eating well, but never felt good.  I was getting weaker and even though I was extremely tired, I couldn’t sleep.  I went to my primary, but he couldn’t find anything wrong.  I went to a nutritionist and a chiropractor, but nothing seemed to help.  My family was getting very concerned so my aunt suggested another doctor that dealt with difficult diagnoses and immunological and infectious diseases.  In one blood test, he had an answer for me.  He said I had Epstein Barr Mononucleosis.   He told me I basically needed to let it run its course and by that time, I was actually starting to feel better so I accepted his diagnosis.  He gave me a list of lifestyle changes that would help it run its course a little quicker, but if continued eating well, exercising, add some vitamins to my routine I should feel better in a couple of months.  His advice seemed to work and within a few months, I was back to myself again.

 

After that I was fine for years.  I went on to pass my Series 7 and Series 63, went to school at night, still bartended on the weekends and became a Mortgage Backed Securities Broker.  My career was right on track but my firm went through a merger and my desk decided to move to another firm, Tradition NA.  Since that firm had not been in that market prior to my desk arriving, I received a promotion to MBS operations manager and MBS Broker.   I was loving life.  My career and social life were great, I felt great and I was optimistic for the future.

 

Then the unthinkable happened.  It was a beautiful Tuesday morning that turned into a nightmare.  We had moved out of the World Trade Center after the merger, but my office was right next door.  I was running a few minutes behind that morning and I walked right into the middle of hell.  The first plane had already hit and my boss concerned for my wellbeing suggested I walk up a block and come around, but the information we had said it was just a Cessna that clipped the side of the building so I continued walking towards the trade center thinking I could pass through the other building.  As I got closer, I saw how bad it really was and decided to call my mom to let her know I was ok.  With the roar of the fire and emergency services, I couldn’t hear on the phone so I ducked behind a median to make a quick call.  As I completed dialing, I heard another roar and looked up.  Another plane was heading right towards me.  I was paralyzed by fear and new there was no way for me to get away.  When the plane hit, I was thrown and the back of my hair and sweater was burnt, but I was alive.  I began to run for my life.  I was lucky.  I was able to get off the island and back to my home where my entire family was sitting around the phone and my little nephew said.  We were waiting for you Aunt Tee Tee.  We heard on the TV that you had a bad day at work.  I was waiting for you to come home because I think you need a hug.  I held that little boy for hours that day so thankful that I was lucky enough to see my family again.

 

I thought that would be the worst thing that ever happened to me, but I was wrong.  I left my job for fear that it would happen again.  I began working as a medical transcriber at a local radiology practice and went back to college at night to finish my degree.  I was sure I could never go back to working in Manhattan but I missed the job I loved and knew I wasn’t done with my career.  Three months after the terror attacks I awoke to tremendous pain and almost no mobility on the left side of my body.  At first I thought I had a stroke but had no neurological symptoms.  I went to the emergency room and was told I had multiple herniated discs.  The doctors attributed it to being thrown on September 11th, but in retrospect it was much more.  Lupus was beginning to take hold.

 

Again, it got better, but this time, it did not fully go away.  I went on with my life, finished school and went back to the financial world.  I accepted a position at Pershing LLC, a division of the Bank of New York, but fortunately, it was not located in New York City.  It was in Jersey City, New Jersey.   I was hired to develop a new department for MBS allocation and clearing, but because of the amount of time that had passed, I no longer had my Series 7 and Series 63 licenses, so I had to take them again before I could even think about being a trader or broker again.   My health seemed fine again so again went back to school to prepare to take the exams again.  In addition, I kept my job at Regional Radiology for some extra money as I had bought my first house right before 9/11 and with the decrease in salary, I had to work a lot harder again, but eventually, I passed the exams and got my licenses back and went on to work with another team to create another new department at Pershing for Prime Broker operations.   That was the beginning of the end for my career.  Little by little, I was getting more symptomatic.  Then in 2007, I lost my mom and had surgery.  I believe the stress from these two events brought Lupus from lingering in the background to a full time flair.  My limbs and joints were constantly swelling, my hair was falling out in clumps, I had a rash and sores all over scarring my whole body, but especially my face.   For three years, I went to doctor after doctor.  None of them were able to give me any real answers.  They would give me diagnoses based on whatever symptom was most prominent at the time of my appointment.  They told me I had adult onset acne.  I was menopausal even though I was only in my mid-thirties. I had chest pain so I had high blood pressure. I had swelling in my joints, so I had bursitis.  I had pain so I had degenerative disc disease.  My favorite was depression.  When they told me that, I lost it in the doctor`s office.  I was so upset I screamed at the doctor.  I was like if I didn’t go into a complete depression after 9/11, I wasn’t depressed now.  I knew my own body.  I knew when something was wrong.  I told the doctor if he didn’t figure out what was wrong with me, I knew I was going to die.  I knew they were missing something.  So once again, he sent me for more blood work.  This time they checked me for everything.  I had never had so much blood drawn at one time.  Finally, I got a real diagnosis that explained all of my symptoms in one disease.  I had Lupus, but my story was only beginning there.  I went to every specialist I could find.  Some even took away the diagnosis only to give it back to me when it would flair again.  It was horrible.  I was exhausted all the time.  I could barely eat.  My hair and skin was a mess.  I couldn’t walk.  I couldn’t sleep.  My body was in a constant state of battle.  They tried all sorts of medicines that would make me even sicker.  I was losing my memory.  I couldn’t stay awake at my desk.  I was missing days or leaving early for doctor’s appointments.  My life was a mess.  I decided to take a short leave to get my health under control.  I stayed out for as long as I could and went back.  I really tried but I realized pretty quickly that I could no longer do my job.  I was staying late every night just to finish the work that had once come so easy to me.  The job I loved I now hated.  In the beginning, my coworkers were very supportive, but after a while, they were tired of covering for me and began complaining to our managers.  One morning they asked me to come into my Sr. VPs office were they very nicely told me that they appreciated how hard I was working to keep my job, but in their opinion, I was not getting any better.  The financial industry was in turmoil and off the record I was told that if I did not apply for Social Security Disability, I was going to be “caught up” in the next layoff.  I was so upset.  I felt like if I stopped working, it was the beginning of the end for me.  In my head, as long as I was able to go to work, I was ok.  But I wasn’t.  Jeez, I even had Tupperware in my car to vomit in so I didn’t have to pull over to get sick every day.   They told me that I was welcomed back as soon as I got my health under control, but because of the very nature and prognosis of Lupus, we all knew they were just being kind.  I already knew my doctor would support the decision to apply for a permanent disability because he had brought it up multiple times prior to my bosses telling me to do it.

 

I wasn’t too worried about money because in addition to federal disability, I had a year of 100% paid leave saved up, and I had paid into a long term disability insurance my entire career that was supposed to pay me 70% of my salary until I turned 62  and provide medical benefits until I became eligible for Medicare.   I was lucky in the fact that my Social Security disability was approved on my first request.  This is not typical.  Most people have to appeal it several times before they get approved, but I won the first time.  Another lesser knows fact about Social Security Disability or SSDI is that you do not automatically get medical insurance or Medicare when you win your case.  It takes 30 months from the date you applied before you are eligible to purchase Medicare.  Which is another misunderstanding.  Most people think that it is free but it is not.  I pay 15% of my disability award to Medicare every month.  Medicare also only covers 80% medical care and only a percentage of the medicines.

 

Again, I was not too worried about my finances because I had a good amount saved in investments and I owned a home and I had the private long term disability insurance.   I SHOULD HAVE BEEN WORRIED.  A week after receiving the letter from SSDI letting me know that I had successfully proven to them that my Lupus disabled me, I received a letter from my private insurance company, that stated they did not believe that Lupus had disabled me.  I sent them tons of evidence to the contrary.  I sent them test results, letters from every doctor and specialist (including the leading Lupus research team in the country at NYU), letters from coworkers, family and friends detailing the effects of Lupus on my ability to work and take care of myself.  Then an even bigger blow.  I received a letter from my employer stating that not only were they taking away my medical insurance, they were doing it retroactively for six months.  So now all the tests and procedures and treatments I received were not going to be paid by the insurance I thought I had.  These bills were now my responsibility.    I was blown away.  How could they do this?  How could this be legal?  What was I going to do?  I had a mortgage to pay and the housing bubble had just burst, I was taking about ten different medicines and seeing three plus doctors each month for treatment.  Where was I going to get affordable health coverage when SSDI was only about 15% of my last year`s salary.   And let us not forget, I was the sickest I had ever been in my life.  I could barely get up and take a shower.  Going back to work was just not an option at that point.   I couldn’t take care of my house, do laundry, go shopping by myself, etc.  Up to that point, I had paid people to do all that for me.  I could no longer afford to do that.  I had friends and family and they were very supportive, but how long can you expect them to help you.    Lupus is lifelong.  People have their own lives and families.  You can’t expect them to take care of you forever.  That is why we buy insurance.  It is for the rainy days.  Well it was pouring in my world and I was now stuck with no umbrella in a hurricane.

 

So now what can I do.  I have a disease that costs thousands a month to treat, a mortgage, the expense of living in New York, etc.  I start looking for lawyers.  Every employment lawyer in Staten Island wants a $30,000 + retainer to even take my case.  The disability insurance is Federal and my former employer`s medical benefits are covered under state law and even though it is completely illegal for them to retroactively cancel my benefits, it seems there is nothing I can do about it.  After months of sitting down with lawyers I finally find a lawyer in Florida that is willing to take my case and take his fee out of my award.   However, there is a catch.  Instead of the customary 33 1/3%, he wants 40% and he can only take the part that is federal.  I agree since it was the best I could find.  He advises it is a tough case because if we go in front of a jury, I don’t “look” sick enough.  I wonder, what is sick supposed to look like. I have a disease that kills over 15% of its victims in the first five years and the ones that survive live in pain and exhaustion for the rest of their lives.   I have plenty of medical tests and doctor’s testimonials, the federal government and their doctors agree with my doctor’s assessment, my employer told me I had to retire on disability, but yet there is almost no way to make the insurance company honor their end of the contract.
At this point, I have gone through all of my savings, borrowed against my 401K, put my house up for sale and I am behind on all my bills.  Every doctor I went to wanted cash up front to treat me because I didn’t have insurance and when I applied for assistance in my state, I was denied for everything but $15 a month in food stamps.  Guess I can forget about the fancy diets my doctors want me to stick to.  It is ramen noodles for me.  One light in all of this was my chiropractor, Dr. Robert Valinoti, continued to treat me for free until I was able to secure insurance.  My primary also tried to handle as much as he could without sending me to specialists.  As long as my disease stayed along the same tract, I could see him and he would continue to write the prescriptions that my specialists normally would write.  I was not able to monitor how these treatments were doing because I could not afford the diagnostic testing that is strongly recommended while taking these medicines.  This became an issue when one of the medicines effected my eyesight.  Had I been monitoring my blood, I probably wouldn’t be wearing glasses right now.

Then to top things off my identity got stolen from when I had to provide my SS number at my local hospital.  The thieves took my Federal tax refund and hit my bank account twice before they were caught.  When I went to the IRS for assistance, they decided I claimed too many medical bills and audited me.  REALLY???  Didn’t they see I became disabled?  Wouldn’t that explain the increase in claimed medical bills??

So what do I do now?  Well, my lupus attacks my joints and bones the most so weather is a big factor in how I feel.  As many see on the news living in New York in the winter is not for anyone with a rheumatologic disease.  The cold and dampness in the winter and the humidity in the summer time is torture.  So I decided to leave almost everyone I love and go to Las Vegas, one of the warmest and dry climates in the country and my best friend, Christine, lives here so I knew I would have some support here.  Since living here, I have seen some great improvement with pain and mobility, but the lack of doctors and support for people with lupus is lacking.  There are two small groups here that help people with Lupus and through volunteering at the Colors of Lupus, I was able to meet others with Lupus and have made some wonderful friends.  With these friends, we decided to open the Charm Foundation.  This foundation is strictly for the patient.  We want to help people, not doctors, researchers or pharmaceutical companies.  They have the Lupus Foundation.  We need advocates to fight for the rights of patients that have no one to insure that they receive the benefits and treatments they already paid for and provide the extras that they need because of the way the disease has impacted their quality of life.

 

I am still pretty sick most of the time, but I am tired of being a victim to a society that gives up on their disabled because they do not fit into what they think sick “looks” like.   We formed a group of people with Lupus to show people without Lupus or who love someone with Lupus, how to fight for us when we are too sick and tired to fight for ourselves.  Lupus is one of the only diseases where I see organizations expect the disabled to fight their own battles in addition to battling a disease that has no end.  We need to find people to fight for those who cannot fight for themselves before it is too late.  We have a whole generation of young people fighting to survive this deadly disease without having the tools to do it.   It is estimated that over 15,000 people have Lupus in Las Vegas, 1.5 million in the United States and over 5 million worldwide.   Ninety percent of these are women.  We need to start making this invisible illness seen.

FRANCES LINSANGAN WEB PICTURE
Volunteer
"Keep smiling and let's change the world for the better!"

Frances Linsangan
Volunteer

July of 1998 was the month and year that changed my life… I was only 16 years old and my world would turn upside down! One day I complained to my mother about feeling sick and cold. My mother took my temperature which seemed to be a little high and decided to take my blood pressure. Not thinking anything of it especially at my age, she noticed my blood pressure was a little bit elevated. There were no other signs at this time besides the high temperature and blood pressure until a butterfly rash popped up on my face a couple days later. My mother decided to take me to a family doctor who then recommended me to a dermatologist. At 16 years old, I was sure it was just something temporary and would get resolved soon. However, sitting in the doctor’s office, I realized that this may be more than just a “cold.” The doctor came in and looked at the rashes very closely and requested blood work to be completed as soon as possible. The doctor stated this may be a sign of Lupus. At this time, Lupus wasn’t very well known and it was uncommon to have Lupus at a young age. My parents weren’t aware of the disease and I wasn’t understanding what was going on until I looked up the disease to only find out that it was incurable.

 

After the results came in from the blood work, I was referred to an Internist, Nephrologist and then to Rheumatologist at the University of Michigan. Lupus was definitely a high possibility but being confirmed a Lupus patient didn’t happen until a month after I started getting sick. The disease is similar to other autoimmune diseases and since it was rare at that time to be diagnosed with Lupus at an early age, it took a lot of time, patience and testing with several doctors. A month later, we got confirmation from University of Michigan that I indeed had Systemic Lupus Erythematosus (also known as SLE). Being an athletic, outgoing and energetic child, I became very sick in a short period of time. My kidneys were inflamed from the Lupus flare so I was put on an I.V. treatment called Cytoxan (small dose of chemotherapy used for cancer patients to reduce the kidney inflammation). Before turning the age of 17, I had a kidney biopsy, steroid treatments (oral and I.V) and Cytoxan chemotherapy done. I gained a massive amount of weight, loss a lot of hair and became very insecure with my body. As a junior in high school and a growing teenage girl, I didn’t know how to handle the disease and never grew up as a normal teenager. The typical crushes, dates and sleepovers that a normal teenager would face was replaced with weight gain, 20+ pills daily and chemotherapy.

 

Living with Lupus definitely has not been easy… Every Lupus case is different and not one case is identical. As a very sick child, I experienced chemotherapy and the struggle of weight gain and image issues. During my college years, I had to go through hip surgery to save my right hip from collapsing (from the steroid treatment and lack of calcium). This prohibited me from walking for roughly 6 months until physical therapy treatment to learn to walk again as well as taking a year off of college. Determined to finish on time, I took more credits than the normal college student, worked as an intern at a financial stock firm, joined a co-ed business fraternity while treating my Lupus.

 

After graduating college in 2004, I decided to try and get in shape and lose some weight with the help of a personal trainer while job searching. After several interviews and being frustrated with the job searching process, I was offered a loan processing position with Quicken Loans. Unfamiliar with the mortgage world, I wasn’t confident with the job offer but my sister convinced me to accept the position. Being stressed with a new job right after college, learning a new industry that I was unfamiliar with as well as the pressure of the business made me want to give up. I knew I went through so much physically and mentally with the Lupus that I couldn’t give up on anything I worked so hard for. I also felt I couldn’t let my family down especially with everything they sacrificed for my health and education. On November 2004, I got in a very bad car accident that would leave me injured with a perforated large intestine, broken ankle, cut up and bruised skin all over the body as well as blood shot eye balls. The doctors kept me under surveillance for two days while doing several testings’ on me. The pain was so unbearable that I felt as though a knife was stabbing me in the lower belly multiple times. Later on, we found out that my large intestine was perforated and I would need a colostomy bag; if I didn’t get surgery right away I would die from the poison leaking out of my intestines. Without a blink of an eye, I decided to do the surgery due to the pain and the feeling of death.

 

The first time I saw myself after the surgery in the mirror, I remember seeing a monster – a girl with a moon face, blood shot eyes, twenty-thirty pounds heavier, bruised body from head to toe, a boot for my ankle and a bag hanging on the left side of my lower belly with a cut belly (from the lower belly to above the belly button). The feeling was unbearable… I complained so much about my image and now I had to live with what I was seeing in the mirror. At that time, I just thought I looked like a monster… bruised, beaten up and helpless. From here, I knew I had to fight through the pain, depression and sadness.

 

A year later, the surgeon was able to reverse the colostomy (the healing process was delayed due to the Lupus) and my life would start feeling normal again. I was still with Quicken Loans, working hard, being recognized as a hard-worker and top producer, when I decided to work remotely with the company in California in 2006 (2 years later I would work remotely in Las Vegas). This was the first time I lived on my own and away from my family. Although it was hard emotionally, it made me stronger, especially dealing with my Lupus on my own for the very first time without my family assisting me. I made a big decision to get off my Lupus medication and take my health into my own hands. I decided to research the disease on my own, speak to several different doctors and focus on my eating habits. Dropping weight, I didn’t really understand the importance of physical fitness & good eating habits to improve my Lupus and well-being until 2011. I knew Pilates and Yoga were great ways to strengthen my muscles and joints that the Lupus were effecting on a daily basis so I decided to join a gym and attend Pilates and Yoga classes. My physical activity would have to be limited since I wasn’t able to do any high intensity cardio workouts due to my left hip needing a hip replacement. The Lupus was pretty much controlled and even the kidney function seemed stable. I was slowly losing weight but didn’t build muscle until I found a new trainer to help me push my goals to another set limit in 2013. Sixty pounds later, I’ve learned what I need to do to help improve my Lupus, when to listen to my body, accept my appearance (although it is still a challenge) and learn to be happy with who I am.

 

Today, I still love the company I work for and am now an Underwriting Training Specialist for Quicken Loans. I love speaking about my Lupus and would hope to start a blog or write a book with my life experiences dealing with Lupus. I have a love for physical fitness and would want to be professionally trained in Pilates to help those in need that cannot afford classes as well as raise money to help families that cannot financially afford Lupus treatment.

 

Friends ask me why I bring up my Lupus so much since they don’t see me as a sick woman living with a disease… For me, I may be living with Lupus but Lupus is not stopping me from pursuing my goals and living life. The disease has opened my eyes to how lucky I am in life, how strong I can be as well as what I can help accomplish in the world. My friends say I am a strong woman and now I can see that I am strong because I have to be and I wanted to defeat all the odds. Although Lupus is hard to deal with at times and sometimes the pain and/or the fatigue are unbearable, I want to be able to be a warrior for all those fighting with struggles in their life. If I can be a role model and help change the life for at least one person in the world, I will always keep smiling and fighting.

 

Being a Lupus warrior will never define me as a woman. I am strong, independent, educated and love to help others. I love seeing the world, learning about different cultures and experiencing LIFE in all angles. Lupus awareness and education are extremely important so that one day we can find a cure for those suffering and living with the disease. Until then…  I say keep smiling and let’s change the world for the better.

nichole
Editor and Journalist

Nicole Castellano graduated from the College of Staten Island with a Bachelor’s in English Writing. Originally from New York City, she expressed an interest and talent for writing at a young age and started to enter her poems in several contests. In 2002, at the age of 16, she received an Achievement Award for Poetic Artistry from the Amherst Society and an Honorable Mention from the Famous Poets Society. She has two poems that have been published on www.poetry.com. Born with a philantrophic heart, she has tirelessly offered her skills to raise awareness for Lupus and Alzheimer’s with both The Charm Foundation and Alzheimer’s Foundation. Today, she is expanding her resume to include, editing and proofreading to assist other writers in finding their voices.

LEE CARLOS
Grant and Media Consultant

LEE CARLOSI would like to welcome Lee Carlos to the Charm Foundation family.  Lee will be handling all marketing inquiries and assisting with grant writing and fundraising.  Please contact Lee at Lee.Carlos@charmfoundation.org

Donna
Grant Writing

Donna Streeter
Vice President of Grant Writing and Corporate Giving

Originally from upstate New York, Donna resided in Las Vegas for the past 12 years. Over the past 30 years, Donna has been privileged to work in the fields of Social Services, Substance Abuse Counseling and Law Enforcement, retiring from a career as an Investigative Probation Officer for Santa Barbara County California. From May 2010 to June 2011, she assisted Second Wind Dreams, an organization that focuses on making the dreams of seniors who reside in elder care communities come true, getting a push-start in Las Vegas as the Las Vegas Community Relations person focusing on dreamweaving, fundraising, public relations and volunteer coordination.   She also served on the Board of Directors of Spirit Therapies – a wonderful therapeutic horse back riding program in Las Vegas that serves mentally and physically challenged children and veterans. While in that position she also researched and wrote grants for Spirit as well as assisted with fundraising, donor requests, media contacts and wrote and published several articles about that organization.

CHARM FOUNDATION’S MISSION STATEMENT
Create innovative programs to provide assistance and resources to individuals affected by lupus by addressing their challenges and improving their quality of life.

The Charm Foundation is a 501(c) (3) organization formed to assist people suffering with Lupus, a chronic, incurable autoimmune disease for which there is little successful treatment.

We formed The Charm Foundation as a patient centric organization that assists patients in their day-to-day life while fighting lupus. We saw an especially enormous need in the category of patients that had worked for most of their lives, but became disabled while they were too young to retire in a traditional manner. We found that these patients were not receiving treatments because of their inability to pay for it, losing their homes, not having the proper foods to eat, etc., and decided that we needed to do something to change that.

All patients should have access to every possible treatment when fighting a disease as horrific and deadly as lupus. The Charm Foundation was formed to make sure that no Lupus Warrior would have to go without the tools they need to fight and beat lupus.