Dr. Maggie Cadet Blog Highlight

In May for Lupus Awareness Month we were able to have a live candid conversation with Dr. Maggie Cadet. She gave us some great information and is our blog highlight for the day.

May was Lupus Awareness Month and I was honored to speak with @lupusincolor about this important autoimmune disease which can target so many organs.

This disease particularly is important to me because of the impact on women’s health and the Black community.  The Lupus Foundation of America estimates that 1 in 250 African American women will develop lupus and Research has shown that Black, Asian and Hispanic patients may experience more complications  the disease at a more rapid rate once a diagnosis is established. 

It is my pleasure to educate all communities but particularly the Black and  minority communities about this autoimmune disease so they may be equipped to take action and battle this disease. I am supporting Lupus warriors of all shapes, colors and sizes!

       HERE ARE SOME COMMON LUPUS MYTHS:

MYTH #1: LUPUS only affects women?

TRUTH: Although 90% of individuals who are affected are females of minority populations, Lupus CAN affect males and many times the disease may be worse at diagnosis and may have kidney and skin involvement.  Males need to be aware of symptoms so there is not a delay in diagnosis and treatment!  Men can’t be afraid to seek help and ask questions about their symptoms if Lupus is a consideration as a diagnosis.

MYTH #2: There is a single type of lupus.

TRUTH: Lupus is an autoimmune disease that causes your immune system to produce proteins called auto antibodies to attack your own tissues and organs instead of a foreign agent or substance.  Sometimes lupus can be limited to the skin only called cutaneous lupus.  Lupus can affect babies/fetuses as well. There are 4 types of lupus:

1) Cutaneous (Skin) Lupus- You can have a purple or red rash or scarring lesions, hair loss or discoloration

2) Drug Induced lupus (DILE)- may be caused by certain medications such as hydralazine for high blood pressure, isoniazid for tuberculosis, minocycline (antibiotic, procainamide and quinidine (anti-arrhythmics), TNF inhibitors used for rheumatoid arthritis. Procainamide and hydralazine appear to have the highest risk for developing this type of lupus.

3) Neonatal lupus- Affects the newborn infants of women with lupus when certain antibodies in the blood (Ro/SSA and La/SSB antibodies) cross the placenta from mother to the fetus. It is rare but can present as a red rash or skin eruption, low white blood cells or platelets, liver disease and some may develop heart symptoms or congenital heart block.

     MYTH #3: You can’t get pregnant or consider having a family if you have Lupus

     TRUTH: Women CAN have a full term pregnancy but some may experience bouts of infertility or pregnancy related issues.. The processes that are involved in the immune response of females with Lupus patients are more at risk for

–        Still births

–        Preeclampsia

–        Preterm births

–        C sections

There are resources for family planning which include The American College of Rheumatology (ACR) Reproductive Health guidelines and also the HOP-STEP website/program for Lupus  patients which is found on lineThere are medications that treat lupus that are also compatible with pregnancy like Plaquenil or Imuran. It is recommended that patients should try and be in remission or have low clinical disease activity for at least 6 months before considering pregnancy.  Also, women should discuss birth control options with their physician until it is time to think about becoming pregnant.

MYTH#4: There is no overlap with Lupus and COVID-19

TRUTH: There may be an overlap in symptoms with Lupus and COVID-19 infection. 

Patients with lupus may be at more risk for contracting the virus because of their already immunocompromised state and the medications these patients are on like steroids which may further suppress the immune system. Please call your doctor if you are experiencing the symptoms below.

Signs of Symptoms of SLE/Lupus flare

– Fever

– Extreme fatigue

– Headaches, neurological symptoms

– Shortness of breath

– Hair loss

– Weight loss 

– Joint pain, joint swelling and muscle aches

– Rash on face (butterfly rash, discoloration, scarring rash) 

– Swollen glands

– Loss of appetite

– Chest pain

– Leg and facial swelling, foamy or dark or red urine- may indicate kidney disease

– New clots if associated with antiphospholipid syndrome

COVID-19 SYMPTOMS IN ADULTS

– Fever

– Fatigue

– Cough (dry)**

– Headache

– Body aches

– Discoloration of feet (“COVID toes”), other rashes

– Sore throat

– Chills

– Loss of taste and smell **

– Nausea and diarrhea

– Respiratory failure

– Blood clotting abnormalities

-No symptoms at all!!

A rheumatologist will have to do blood work, urinalysis, chest radiograph and assess symptoms to determine if further evaluation for COVID infection is needed.  Currently investigation for optimal COVID treatment is still being conducted.  Steroids and other immunosuppressants work for Lupus. Ironically a recent study conducted in the UK has shown Dexamethasone (orally or IV) to improve survival in critically ill COVID19 patients requiring oxygen or a ventilator.

Let’s get informed to Fight This Disease!

With love,

Dr. Maggie Cadet

NYC rheumatologist

Associate Attending, NYU Langone

www.maggiecadetmd.com

Be sure to check Dr. Cadet’s website for more great information on lupus and other autoimmune issues.

#LupusInColor #BlogHighlight

Think Before You Speak

Think Before You Speak!

“you’re too pretty to be sick”
“everyone gets tired”
“if only he or she tried harder”
“you’re just too young to be sick”
“you’re just too smart”
“you’re lazy”
“you’re making it up/ it’s all your head”
“you should pray more”
“your being punished for your ancestors sins”

Just some of the things that a Lupus warrior can hear day to day as they battle a life altering and life threatening disease. Just because you don’t physically see the pain a Lupus Warrior is in from day to day doesn’t mean they are not dealing with it. Many Lupus Warriors are masters of disguise to avoid hearing harmful words about them or their medical choices, making surviving and thriving even harder.

Before you decide to give your opinion about someone who’s disease doesn’t show outwardly always and that you know nothing about, think about it.

Educate yourself about Lupus and don’t make blanket statements that hurt more than they help! #LupusInColor

Day 21 30 Day Get Moving Challenge

Day 21 30 Day Get Moving Challenge

Put on some music, grab your kids, your sweetie, or go solo and groove for at least 15–30 minutes. That’s one of your favorite albums.

Dancing is something that practically everyone can enjoy doing. It has been shown that one of the benefits of dance is that it helps prevent mild depression and improves confidence in the dancer.

Try this playlist to get your dance on:

  • “Dance Monkey” by Tones And I
  • “Juice” by Lizzo
  • “Yummy by Justin Bieber
  • “The Box” by Roddy Rich
  • “Bulletproof” by La Roux
  • “Toast” by Koffee
  • “Countdown” by Beyonce
  • “7 Rings” by Ariana Grande
  • “Bounce” by Logic
  • “No Diggity (Fare Solid Remix)” by Blackstreet
  • “DJ Turn It Up” by Yellow Claw
  • “Bulletproof” by La Roux
  • “No Problem” by Chance the Rapper

#LupusInColor #30daygetmovingchallenge

Take It Easy

When you are dealing with lupus flares and issues you have to take it easy. You can’t continue to push yourself to a point of no return to peace in your moments. Don’t wait until your body makes you stop and rest. Rest and listen to the cues of your body before it forces an everlasting flare on you. #LupusInColor

Got Lupus

Lupus isn’t a simple disease with an easy answer. Fevers, aching swollen hands and knees, infections, hair loss, pleurisy and more..It’s time to fight back and take your life back from Lupus. Life is meant to be lived! When you feel good live life to the fullest. When you feel bad ride out the wave to the shore dust off the sand and hit the ground running. Remember you have lupus, lupus does NOT have YOU!

I have to recite this positive lupus affirmation to myself daily. Although lupus is a part of my life I have to constantly input the importance of living my life to the fullest even in times of pain. Not every day will be roses and butterflies with lovely songs of positiveness. Sometimes it will be hard and it is in those moments that I must pick up my cross and walk reciting ….” I have lupus lupus does NOT have Me…. I have lupus lupus does NOT have Me…. I have lupus lupus does NOT have Me…. I have lupus lupus does NOT have Me…. I have lupus lupus does NOT have Me….” I will say it sometimes over 1000 times a day. I know that sounds crazy right? No it really isn’t. There is so much POWER in my tongue that honestly the statement…”I have lupus lupus does NOT have Me….” allows me to move through every pain, every heartache from the pain. It allows me to mentally prepare myself for a journey I did not choose but am taking step by step with a mindset that I will NOT allow anything that comes with lupus to bring me down. I will not allow it to take me out of my character. I will not allow it to wear me to the ground and beat me up mentally, physically or spiritually.

Someone asked me, “oh you Got Lupus?????” First off, I looked at them like they had three eyes because who just busts out and ask you that? But, I answered and said, “uh yeah I have lupus, I’ve got it right by the balls. Right where I want it strangled in the middle of my hands.” They kind of looked at me crooked eye like huh.

I had to explain that my talk to myself and to lupus directly affect the way I go about my day. If I wallow in the pity like I really want to, I have allowed lupus to take control of me and become an inherent part of me. I won’t allow that to happen. So I change my way of talking in order to curse the demon of lupus out of my body. I believe in God and I know that He is not through with me yet. Since my God is not a God of fear, despair, sickness and sadness I choose to dwell in the spirit of faith and hope and I choose to speak in that manner. Never will I give in to the pity of what lupus can bring. Lupus can destroy your spirit but I refuse to be a part of that pity party and allow it to consume me. So I choose to positively speak it out of my life. I choose to react differently so my mind will convince my body to perceive lupus in a different way. When I feel good, I will do. When I feel bad, I will rest. Every day I WILL curse lupus so that it knows that it is not wanted in my body. I WILL curse lupus so it know I’m not the one to mess with.

Got Lupus????? Yeah, but lupus don’t got ME!
SPREAD THE WORD!

#LupusInColor

Butterfly Flight Lauren Green

THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES
Butterflies of Hope Warrior Stories

Flight of the Butterflies, Butterflies of Hope Warrior Stories is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Lauren Green

Childhood Battle of the Beast

As a child, I enjoyed bike riding, swimming, and being outside in nature. In 1993, at age 6, I was diagnosed with lupus (SLE), with symptoms of joint pain, leg rash, and a 105 temperature. What did a 6 year old know about lupus in 1993? Absolutely nothing! All I knew is that I had to swallow distasteful liquid each day, known as Prednisone. The rheumatologist that I was seeing as a child copied two black and white pages from an encyclopedia, then handed it to my parents to read. There was barely any information or resources about lupus back then. The Lupus Foundation did not exist in Georgia; it was the Arthritis Foundation at first.

As a child, lupus bothered the joints of my ankles, feet, and fingers. I participated in sports and extracurricular activities at a very young age to help my bones. Softball games, swimming, piano recitals, and violin concerts kept me busy and focused as a child. Despite lupus at a young age, I had a very active childhood. However, I never focused too much on “having lupus.” I was busy living life as a high school teenager.

At age 16 my 1st flare up caused high blood pressure leaving me hospitalized in ICU for 7 days. I recovered and stayed in remission for 8 years until the beast struck again in 2012. Lupus attacked my kidneys causing kidney failure, which led to the unthinkable – dialysis. Even though I dialyzed 3 times a week for 3 hours, I did not become discouraged. I knew sooner or later that the sun would shine again once the storm was over. After 9 long months of dialysis and 12 months of chemotherapy, miraculously my kidneys regained function. At age 32, I currently focus more on living a proactive lifestyle by healthy eating, exercising, and helping others. I partake in yoga, stretching, and deep breathing. During my spare time, I take pride in volunteering at the Lupus Foundation and with a nursing organization that provides patient care and education to the uninsured population.

I would like for others to know that they are a strong individual that will do great things in life. Continue to have faith and always be thankful for each day. To the younger children with lupus; your future is bright regardless of this cruel disease. Do not let lupus put “limits” on your life. To the parents of young children: it takes a lot of strength, patience, and understanding to deal with lupus as a parent, but it takes a special kind of strength to battle lupus as a child. To all lupus warriors; do not allow lupus to define who you are as a person. Lupus is a fraction of your life. It does not consume WHO you are! Don’t hold yourself hostage. Redirect your attention to positivity. Waking up each day gives me hope, knowing that I’m capable!

Butterfly Champion,
Lauren Green

Lupus In Color is excited to present Lauren Green’s story to the world. As a Lupus Warrior she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Lauren Green. YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY. YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY! FLY ON!

PLEASE SHARE Lauren Green’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness

Lupus Awareness Month Fact 31

Butterflies of Hope – Flight of the Butterflies

Spreading Lupus Awareness One Butterfly at a time

Let this butterfly flutter all over cyberspace!

May 31st Lupus Fact

Organizations and individuals across the country have come together all month to help promote & heighten awareness about lupus. The  hope is to not only to educate by spreading the truth and facts about lupus but to also one day find a cure.

This is your 31st Butterfly of Hope.We need awareness! We need a cure!Encourage everyone you know to let it FLY!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #SpreadLupusAwareness #LupusAwarenessMonth

Butterfly Flight Angela Lackey

THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES
Butterflies of Hope Warrior Stories

Flight of the Butterflies, Butterflies of Hope Warrior Stories is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Angela Lackey

On February 1, 1996, an emergency Cesarean was done due to preeclampsia I gave birth to a beautiful baby girl that was born at 30 weeks premature with a hole in her heart. The doctors thought that I would be fine, and everything would return to normal after giving birth, but things continued to get worse. My blood pressure was still not normal, my wound was not healing correctly, and blood work was abnormal. The gynecologist was unable to figure out what was wrong with me, so they began to consult with a specialist.

I had been in the hospital for over 5 days at this point and was unable to visit with my newborn baby in the neonatal intensive care unit.

I was later diagnosed with Systemic Lupus Erythematosus by infectious disease doctor and was linked with a Rheumatologist and internal medicine doctor. I was put on several different medications with one being prednisone to help control lupus.

After being home for only 2 days I was rushed back to the hospital and admitted where emergency surgery was done called Pericardiocentesis. Due to all the issues from the lupus flare of giving birth, another surgery, a heart doctor was added to my care. I was in the hospital this time for about 7 days and unable to visit with my newborn baby prohibited bonding time. All that I could do was call to check on my baby and let my husband and mother visit with her. She was later discharged as a healthy baby at 4 weeks old with no major medical issues where we bonded and still have a strong bond today.

Depression hit after receiving the diagnosis of lupus. I was hurt, didn’t know what direction to turn because I was in a new relationship, a new baby, and trying to finish school. Then to be told you have lupus and wasn’t familiar with the disease made things even harder for me at the time. It was an emotional process that I was not ready for at the time because I was only 21 years and that was concerned the prime of one’s life. I had support from my family, church family and friends helped me through a very hard time in my life. To help me with coping I educated myself about lupus.

I was later told that I was unable to work due to all the issues from lupus. As time went by my health started to get better and I was eventually able to go back to work. Over the years I continue to have lupus flare and other medical issues.

Spring of 2016 as my health began to start failing me. I had the flu, pneumonia, pleurisy and I was left with a bad cough that would not go away. There was continued visits to internal medicine doctor, pulmonary specialist, and rheumatologist. I even consulted with getting a second opinion from another rheumatologist with no help. Until one day my regular rheumatologist did further test and consulted with another doctor which proved I had Interstitial Lung Disease. The recommendation was to take Cytoxan by IV. After I researched it and another second opinion, I did the treatment. I was still having some issues, so I was sent to a Pulmonary specialist at UAB where it was recommended to start taking Cellcept. I am currently on Cellcept and low dosage of prednisone to help maintain.

I currently still have lupus flares where I have major leg pains, muscle pains, and fatigued. I have learned that I have other major medical issues that have caused doctors to say that I am no longer able to work. I have been diagnosed with type 2 diabetes, migraines, avascular necrosis, neuropathy, osteoarthritis, hypertension, insomnia, depression/anxiety, Cushing’s syndrome, Obstructive sleep apnea, sickle-cell trait, restless leg syndrome among other things. I have 3 pages of medications that I take daily or take as needed pending the situation. I keep a list of medications and my diagnosis with me at all times in case something goes wrong and I am rushed to the hospital.

I have fought to get on disability with no avail since August of 2016. I am currently still fighting for my disability because the doctors feel that I will no longer able to work. The struggle is real because I never thought I would be in this position of not working, having all these major medical issues and having so many lupus flares that are beyond my control.

It is currently an emotional battle to cope with my situation of not working, depending on my husband, and family members. I don’t feel I have the support I had 23 years ago with the diagnosis of lupus, because times have changed, everyone has their own challenges compared to then. I know it’s through faith and the grace of God that I’m still here today. Most of my days are spent journaling, keeping up with doctor’s appointments, reading, spending time with family/friends, advocating and believing in my true purpose in life and that’s fighting for my life. I believe it’s important to let others know my story because it is a struggle for me each day to make it through the day. I want to encourage others to be the best they can be and not let the disease take over their life.

Lupus In Color is excited to present Angela Lackey’s story to the world. As a Lupus Warrior she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Angela Lackey. YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY! FLY ON!

PLEASE SHARE Angela Lackey’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness