Kelli
Schrag, USA
Patient
Profiles DAY 23
June
Scleroderma Awareness Month 2017
Raynaud's,
Autoimmune Rare Disease
 |
| Kelli Schrag, USA |
Name:
Kelli Renee’ Schrag, 37 years old
Location:
Amarillo, Texas, USA
Diagnosis:
Limited (CREST) Scleroderma
Secondary Raynaud’s Phenomenon
Peripheral Arterial Occlusive
Disease
Triple X Syndrome (47, XXX Chromosomes)
Year of diagnosis: October 2012,
May 2014
Age of diagnosis: 32 years
old, 34 years old
Where/who diagnosed you?
Scleroderma, Secondary Raynaud’s Phenomenon -
Dr. Mortansen, Rheumatologist at Via Christi Clinic in Wichita, KS in
2012.
Limited Scleroderma - Dr. Ashima Makol,
Rheumatologist at Mayo Clinic in Rochester, MN in 2014.
Peripheral Arterial Occlusive Disease - Dr.
Robert McBane, Vascular Doctor at Mayo Clinic in Rochester, MN in 2014.
Triple X Syndrome: 47, XXX Chromosomes - Dr.
Charles Coddington III, Endocronologist at Mayo Clinic in Rochester, MN in 2014.
What were your presenting
symptoms?
When I was a child I had broken arms and in my
20’s I had issues with my bones fracturing in my feet, rolling of my ankles
when walking, and the ball of my foot hurting when I walked.
In 2004, had bone loss in my lower mandible due
to an aneurismal bone cyst.
I remember during college breaks from 1999-2004
in the winter, I worked in maintenance and my hands would turn purple and often
go numb.
No one ever seemed too concerned about it, but
my hands would take a long time to warm back up.
I continued working outside after college until
2010, when I chose to stay at home with my two children.
I remember when working in the flowerbeds and
pulling weeds, my hands would get stiff and I had some indentations in one of
my fingers from writing.
After giving birth to my son in 2008, I had a
pinched sciatica nerve and I began having issues with Carpal Tunnel.
In the winter of 2011, my hands started turning
white with no reason or temperature change.
In 2012, after running in a 5K race, my
sciatica nerve was pinched again. My fingers continued to turn red, white, and
blue into the summer months, where they also started going numb.
My hands started to swell and were mottled,
with red and yellow, and red surrounding my cuticles. I had 4 miscarriages from
2007-2012 with 2 healthy pregnancies during that time.
How long did it take for you to be diagnosed
after first symptoms?
2 months and 1 ½ years for being
diagnosed.
I never realized what was causing all of my symptoms
listed above but, after staying home and not working, I was seeing Dr. Derin
Dopps, my Chiropractor in Wichita, KS in August 2012 and after having 2
miscarriages in a row and my fingers turning red, white, and blue in the middle
of the summer, he recommended that I go to a Rheumatologist, as he thought I
had Raynaud’s Phenomenon.
I scheduled an appointment with my Primary Care
Physician, Dr. Ronald Stevens at Via Christi Clinic in Newton, KS as I had to
have a referral to see Dr. Mortansen, Rheumatologist at Via Christi Clinic in
Wichita, KS.
I had to wait 2 months after this appointment,
to get into see Dr. Mortansen. He took 22 vials of blood for lab work and
x-rays of my chest, hands, and feet and the lab work was sent to Mayo Clinic in
Rochester, MN.
It took 2 weeks to get my results back from Dr.
Mortansen and the lab results showed Scleroderma and Secondary Raynaud’s
Phenomenon.
His office sent me a pamphlet of information on
Scleroderma and in the pamphlet it had recommendations to have an
Echocardiogram done annually.
There was no follow up. I was just told to
watch for symptoms, but I wasn’t sure as to what symptoms I should be looking
for, as it was all a shock to me with no added information.
I was left with nothing, which resulted in my
checking the internet for answers which is where I found that most people don’t
live past 40 years old when they have Scleroderma.
I had lost hope and became very stressed with
no information given to me following the diagnosis.
The Digital Tip Ulcers with basal line
haemorrhages on my cuticles and fingernails started in January 2013, shortly
after being diagnosed.
I began seeing Dr. Brett Nedich, a new Primary
Care Physician and Dr. Mortansen for these ulcers. The ulcers took 6 months to
heal and 3 months later I had another one.
 |
| Thanks to Kelli for sharing her digital ulcer images |
After having several digital tip ulcers for the
following year and a half, I began to get hopeless and depressed.
The pain from the ulcers was excruciating and I
wanted to just quit living. I reached out to my family, friends, and most of
all God and I began seeing things in a new light and seeking out other doctors
with a holistic approach, using food as medicine.
In 2014, I began seeing a Nutritionist and in
May of 2014, I went to see Dr. Jeffrey Davis at Prairie Health & Wellness
in Wichita, KS as he was a holistic medicine doctor and he referred me to Mayo
Clinic in Rochester, MN.
At Mayo Clinic, I saw a Rheumatologist, Dr.
Ashima Makol and she did several blood tests including an ANA Centromere Test
and she diagnosed me with Limited (CREST) Scleroderma.
I also saw Dr. Robert McBane, a Vascular Doctor
at Mayo Clinic who did a Vascular Study and diagnosed me with Peripheral
Arterial Occlusive Disease, and Dr. Charles Coddington, an Endocrinologist, at
Mayo Clinic who did Genetic Testing on me and diagnosed me with Triple X
Syndrome (47, XXX Syndrome), which may have been the cause of the 4
miscarriages.
Current Reality:
I currently have no digital tip ulcers, only
scarring on 3 of my fingers from old ulcers. I am taking 4.5 mg LDN (Low Dose
Naltrexone), but my doctor would like to see how I do off of the medicine since
I’ve been on it for 15 months now.
I started the LDN in February 2016 gradually to
help with my symptoms as I had heard that it had been beneficial to others with
autoimmune diseases. It has helped tremendously!
Once I started taking the LDN, I began to
notice I could do a lot more with my hands! My hands had caused me to not be
able to function or work very well and with the LDN I was able to actually use
my hands, do office work, close my fist, type, write, meal prep, cook
volunteer, hold a book without my hands falling asleep, and lots
more!
For the past 2 months, I’ve used an Infrared
Sauna daily for 30-45 minutes to help my body to detoxify and to heal. I had a
spot on one finger that I was concerned about developing into an ulcer, but it
is completely gone after the use of the Infrared Sauna!
My hands tend to swell and are always mottled
with red and yellowing in color and my fingers are red around my fingertips and
cuticle area. I tend to get Raynaud’s attacks when it is cold, they are in
pain, and in stressful situations.
I am currently doing an Elimination Diet to rid
my body of added toxins, as I have become very sensitive to many different
foods that I eat and ingredients that touch my skin. I am allergic to Wheat,
Gluten, Dairy, Chicken, Onions, Candida, Eggs, Corn, Tomato, and many other
things. Histamine foods cause a lot of bloating and inflammation within my
digestive tract. I get constipated and have haemorrhoids when certain foods are
eaten. It is hard to stick with a diet when I never know what may cause an issue
with my body.
I drink Zeal by Zurvita as a supplement to help
provide my body the antioxidants and nutrients it needs and Vegan Shakeology by
Beachbody to provide my body with a protein and additional antioxidants and
nutrients that my body is unable to get from having so many allergy
sensitivities.
I take 2 Tbsp of BRAGGS Apple Cider Vinegar, 4
oz water, ½ squeezed lemon juice, and 1 Tbsp Honey 2-3 times a day to help my
digestive issues.
I take a Probiotic with 100 billion Live
Cultures and 16 strains of bacteria, 3g of Krill Oil to get my Omega 3’s to
help with joint pain, Vitamin E to help get healthy fats in my body, DHist to
help with allergies, 120 mg Gingko biloba to help with the Raynaud’s
Phenomenon, 250 mg Strontium citrate to help with bone health due to
significant bone loss in my lower mandible due to being allergic to the metal
oral implants I had placed in my mouth in 2006, 1000mcg Vegan Vitamin K2 to
help with bone health, and 150 IU Vitamin E Oil as an antioxidant.
My mouth used to be very dry and now it is
moist after having the metal in my mouth removed from the oral implants, screw,
and crowns.
I use Peroxyl and Himalaya Herbal Toothpaste
for my oral care.
I have had the following annual tests done,
since being diagnosed in 2012, Pulmonary Function Tests to check my lungs,
Echocardiograms to check for blockages in my heart, and Chest X-rays to check
for blockages. All tests have been normal with a small blockage in my
chest.
I had oral surgery in March 2017 to remove my
oral implants, a partial screw that had broke when the oral surgeon was trying
to remove it in June 2016, and crowns of 5 teeth in my lower mandible that were
placed in 2006, due to a metal allergy to Titanium dioxide, Titanium sulfate, and
Vanadium that I was tested for in November and December of 2016 with
Neuroscience Pharmasan Labs MELISA Metal Allergy Blood Tests by my Primary Care
Physician, Dr. Eric Ehle.
My hair has been falling out a lot which may be
due to detoxification of the oral surgery and the metals, but I’m not
sure.
I have varicose veins on my right leg and ankle
that can become painful and swollen at times when I walk and sit for long
periods of time.
I have red dots on my face and along my
cuticles on my fingernails, which could be Telangiectasia.
I have low back pain, shoulder, and neck pain a
lot, which I see my Dr. Eric Ehle for and he does chiropractic work on me and
acupuncture.
I have Raynaud’s Phenomenon and wear mittens
almost all year round, but I’ve noticed I haven’t had to wear them as much
since I had the metal removed from my mouth.
I have vertical ridges and very small moons on
my fingernails. My house is kept at 75 degrees, if it is below 73 degrees
inside or outside, I get too cold and have to dress like it is freezing
outside.
I am currently seeing Dr. Ehle as my Primary
Care Physician and his Nutritionist in his office, to help me figure out what
foods would help me to absorb more nutrients and which ones to get rid of to
heal my gut.
I no longer take the Tracleer as it was
recommended by my Primary Care Physician to remove it before my oral surgery. I
noticed no difference in removing the Tracleer and my current condition
remained well.
I have since had the Paraguard Copper IUD
removed that I had placed for taking the Tracleer medication to prevent
pregnancy and birth defects and I no longer have to have monthly liver function
tests or pregnancy tests. After stopping the Tracleer, I did not have my
menstrual cycle for 51 days, and I had done a pregnancy test 1 month following
stopping the medication, and the test was negative, so my body may have just
been adjusting to the medication not being taken.
I still am very careful with what I put on my
body as I develop hives easily, if I have an allergy to certain ingredients,
especially alcohol, latex, grape seed oil, and rosemary extract. I have more
energy than before and am able to exercise more.
My face structure has changed, since having the
oral surgery, in a good way, as my jaw line looks straight and not
slanted.
I am able to continue volunteering at the
school my kids attend and the church we attend.
I have had several doctors and specialists since
2012 and have become my own advocate in trying to find the best person to care
for me. I have currently found that with my current primary care physician, Dr.
Eric Ehle, Well Life Family Medicine in Amarillo, TX, and by the grace of God
to get me through this fight!
In June 2015, I started a Facebook Page with Nicola Whitehill as an
Admin, and my blog
healinglovingsclerodermawithrealfood.blogspot.com
to help keep others informed about my health, and to help them, to also use food
as medicine, and to help them to continue fighting and being their own
advocates in this fight for a cure for Scleroderma!
I would like to incorporate juicing and bone
broth into my diet to help heal my gut! And I am excited to see what my body
does as I continue to heal after the oral surgery I had in March of 2017. I
haven’t been able to work since 2013, when I got the digital tip ulcers, but I
would like to look into it.
I would not have been able to type this or
write with my hands between 2013 and 2016, due to the digital tip ulcers I was
getting. Here is what happened during that time:
In 2013, when the digital tip ulcers started, I
began seeing Dr. Brett Nedich as my primary care physician and he had no clue
what to do about the digital tip ulcers and found pictures on the internet to
show me what they could be.
He referred me to a vascular doctor to have an
Echocardiogram done and after the test came back normal, he had me have a
Transesophageal Echocardiogram (TEE) Test done to check my heart for blockages.
There were no signs of a blockage to cause the digital tip ulcers.
My rheumatologist, Dr. Mortansen recommended
that I use Nitrobid for my hands to improve circulation and to take Slo-Niacin
to help me to stay warm with the side effects of hot flushes, they were not
very pleasant. I stopped the Slo-Niacin, but continued to use the
Nitrobid.
My rheumatologist also had me take 80 mg
aspirin and Amlodipine daily. I continued to get ulcers that lasted 6 months and
would return on another finger 3 months after that and I had to stop my small
home business selling Premier Designs Jewelry as I was homebound due to the
weather and the pain in my hands.
I wanted more answers about why my body was
continually getting the digital tip ulcers. After being severely depressed and
stressed and almost committing suicide, I found support from my husband,
family, friends and especially God. I realized this fight was more than I could
handle and I needed to put my complete faith, trust, and hope in God to get me
through it. After I made that decision, I began seeing things in a whole new
light!
In 2014, I began seeing a Nutritionist, Dr.
Patrick Garrett in Newton, KS. He helped me understand why my body may be doing
some of the things it was and we found more sensitivities that my body had
towards food and things I applied to my skin.
In March 2014, I had a Comprehensive Food Panel
done, called an IgG ELISA blood test to check what foods caused the highest
amount of inflammation in my body. I was using MediHoney on the digital tip
ulcer as it was recommended to use Manuka Honey as a healthy alternative to
healing wounds.
I also stopped seeing my primary care physician
and I began seeing a Holistic Medicine Doctor, Dr. Jeffrey Davis at Prairie
Health & Wellness in Wichita, KS, and he became my Primary Care
Physician.
He referred me to Mayo Clinic to get further
diagnosed. Dr. Robert McBane, is my Vascular Doctor at Mayo Clinic and after
doing a vascular study, they diagnosed me with Peripheral Occlusive Arterial
Disease of the Upper Extremities due to a blockage in my right pointer finger
where my fingertip was permanently purple from the lack of blood
flow.
Dr. McBane took a conservative approach to
start with by prescribing an Intermittent Arterial Compression Pump to help
pump oxygen into my arms and provides blood flow to help my hands to heal from
the digital tip ulcers. I was to wear the cuffs and run the pump for 8
hours/day when I had the ulcers and 4 hours/day for 3-6 months without the
ulcers.
Dr. Ashima Makol, Rheumatologist at Mayo
Clinic, had me switch to taking Nifedipine instead of Amlodipine, as it wasn’t
working. Dr. McBane also recommended that I use Iodosorb for the digital tip
ulcer to debride the wounds. Iodosorb was $60 a tube and insurance would not
pay for it, so I never used it during the time I had this digital tip
ulcer.
While I was at Mayo Clinic, I saw an
Endocrinologist to do genetic testing to see why I’ve had so many miscarriages,
4 total and why I’ve had 2 healthy pregnancies during that time. It was found
that I have Triple X Syndrome (47 chromosomes, XXX Syndrome), which could be
the cause of the miscarriages.
After leaving Mayo Clinic and continuing the
usage of the Intermittent Arterial Compression Pump, the digital tip ulcer
began healing. I continued the pump after the healing of the digital tip ulcer
as recommended. I had trouble with insurance covering the Intermittent Arterial
Compression Pump as it was seen as experimental.
The stress of that, and all that was going on,
created another digital tip ulcer and it was recommended that I see Dr. Shirley
Wang, a Rheumatologist in Wichita, KS. She recommended that I take Plaquenil,
but I did not take the medicine as my primary care physician didn’t recommend
it as it was just covering up the symptom of inflammation and there were ways
to address that besides using a medicine as a band aid for the symptom.
I had allergy testing done by Dr. Jeffrey Davis
to determine what foods I needed to stay away from as well.
Dr. Shirley Wang recommended that I take
Sildenafil (aka Viagra), which I did take, but I didn’t notice a
difference.
I began seeing a hand doctor as well in
Wichita, KS and it was recommended that I not go outside if the temperature was
below 40 degrees and to keep my body covered as I could risk losing my fingers
or toes from gangrene.
I had not had any issues with digital ulcers on
my toes, but I’ve had issues with cold feet and mottled yellow and red colors
on the bottoms of my feet. I researched the medicine Tracleer, also known as
Bosentan, and found that it could be taken to prevent digital tip ulcers. After
lots of paperwork and having an IUD placed as a requirement for taking the
medicine, Dr. Shirley Wang prescribed the medicine to me.
In January 2015, I had severe pain in my Left
ring finger and both hands turned grey and white in color and I went to the
Emergency Room where they gave me Morphine for the pain which didn’t even touch
it with the first dose and had to give a second dose to take the pain
away.
Dr. Shirley Wang, my Rheumatologist, sent me in
for a bone scan where it was determined that I had Osteomyelitis, a bone
infection, in my finger. They put me on 6 weeks of IV antibiotics that I gave
myself at home through a PICC Line that they put in my upper Right arm. I went
in weekly to have it checked and to have the bandage changed. Then I continued
with 3 weeks of oral antibiotics. I was also seeing a wound care doctor, Dr.
John McEachern in Newton, KS. They used a pain medicine that they rubbed on my
finger that caused a Raynaud’s attack.
They also gave me bandages to use to change
daily, called Medipore Tape and Mepilex Bandages to help with the healing of
the digital tip ulcer. After seeing the wound care doctor, it was too painful
for me to allow them to touch my finger and care for me, so I began my own
wound care at home and I bought Iodosorb, Mepilex Bandages, and Medipore Tape
from the website www.allegromedical.com for a fraction of the cost.
During this time the digital tip ulcer on my
finger began to heal, although it has left a scar and all my good and bad bacteria
was gone. So I had to rebuild my immune system from all the
antibiotics.
In June 2015, I started the Facebook page
Healing Loving Scleroderma with Real Food with Nicola Whitehill as my Admin to
keep others informed about my health, inform others about Scleroderma and using
Food as Medicine, and helping others to continue fighting and being their own
advocates in this fight to find a cure for Scleroderma.
During this time, I began Juicing following a
28 day plan by Jason Vale and I continued it for 2 more weeks after the 28 days
was complete. I felt my best during this time, with occasional Raynaud’s
symptoms. The inflammation decreased significantly and the joint pain was gone!
I felt amazing and my skin looked great! I was able to exercise and lose
weight! I went to Mayo Clinic for a follow up and the doctor’s told me to keep
doing what I was doing with the juicing.
I had a spectra cell test done to see what
nutrients I needed and the results showed that I wasn’t absorbing the nutrients
from all the juice I was taking in, from the fruits and vegetables. My Primary
Care Physician, Dr. Jeffrey Davis recommended several supplements and that I
incorporate more fibre and lean meats in my diet.
I continued to juice, but eventually stopped as
it was hard to keep up with the supplementation and the juicing with 2 children
and a family as we were preparing to move to Amarillo, TX for a new job for my
husband as we were looking for a place that was warmer than only 3 months out
of the year.
In October of 2015, my family moved to
Amarillo, TX and I had developed a digital tip ulcer when my husband moved here
in September 2015. I had trouble getting into see a Rheumatologist and get
established with a new doctor, which was an awful experience as no one could
see me very soon being a transfer and no one in Kansas knew any doctors that
specialized in Scleroderma care.
Not having a doctor resulted in me using the
bandages, Iodosorb, and Manuka Honey to do my own wound care at home. I am
thankful that changing my bandage and dressing on my digital tip ulcer twice
daily was very beneficial and it healed in 7months. It was hard to get a
doctor, let alone one, to prescribe the Tracleer medicine, as it wasn’t a
medicine the Rheumatologists here were familiar with. I was able to continue
the Tracleer as it was prescribed from my Rheumatologist in Wichita, KS and
covered under Pathways Insurance.
After several months I was able to get into see
a Rheumatologist, Dr. Christopher Wright. He prescribed Sildenafil (aka Viagra)
to help with the Raynaud’s in March of 2016 and he referred me to Dr. Bruce
Baker, a Pulmonologist at the Diagnostic Clinic in Amarillo, TX to have a
Pulmonary Function Test done and to Dr. Daniel Beggs, a GI Doctor at the
Diagnostic Clinic.
Dr. Beggs said they could do tests on my GI
Tract and could prescribe antibiotics. I told him I would like to wait as I
didn’t want a band aid to manage a symptom. Dr. Baker did the tests and was
willing to prescribe the Tracleer for the digital tip ulcers as Tracleer is
normally used for Pulmonary Hypertension. I had been taking the Tracleer as a
way to prevent the digital tip ulcers. I continued having liver function tests
and pregnancy tests done monthly as Tracleer could cause liver failure and
severe birth defects. My liver function stayed normal during this time and I
did not become pregnant.
In February 2016, I began taking LDN, Low Dose
Naltrexone prescribed by my primary care doctor in Wichita, KS. I began looking
for a holistic medical doctor that would see me as it wasn’t convenient having
a doctor 6 ½ hours away. I began seeing Dr. Eric Ehle at Well Life Family
Medicine in April of 2016. It has been a relief as I have found someone that
wants to help my body as a whole and not just putting a band aid on the symptom
and taking medicine all my life.
After seeing a new dentist in Amarillo, TX, I
was referred to Dr. Aaron Adkins, D.D.S. in June 2017, who did a deep cleaning
on my lower mandible teeth as I was having severe swelling of my gums and
recession of my gums around several of my teeth and a cold sensation when it
was windy outside. During this cleaning, they surgically removed a part of a
metal screw that broke in my lower mandible during surgery that was placed in
2004 from a bone graft that I had done. The bone graft was put in after I had
an aneurismal bone cyst removed that caused significant bone loss and the teeth
to be decayed inside. After the cleaning and the removal of part of the screw,
the swelling returned.
In August, I stopped taking the Sildenafil as
it wasn’t helping prevent the Raynaud’s attacks and we began trying Acupuncture
on my hands and body to help relieve the symptoms of the Raynaud’s that I was
having. In September, I had a bad fall and bruised my tailbone. The joint pain
continued and it was harder to get out of bed. My pelvis had to be readjusted
with several adjustments by Dr. Eric Ehle and acupuncture was done to help with
the healing.
In November and December 2016, I had MELISA
Metal Allergy Testing done with blood tests to see if I was allergic to the
metal in my oral implants as the swelling around my gums continued. The MELISA
Metal Allergy Tests showed that I was allergic to Titanium dioxide, Titanium
sulfate, and Vanadium all of which were in the makeup of my oral implants and
crowns.
My primary care physician, Dr. Eric Ehle and
dentist, Dr. Jack Fong, Amarillo, TX were concerned with my immune system with
me having surgery, since my husband and I, decided that I should have the metal
removed from my mouth. It was recommended that I have IV Therapies done 5 times
with added supplementation before and after surgery to help my body to heal
after surgery.
The IV’s were hard to place for the nurses as
it took 2-3 sticks before they could hit the vein due to my Raynaud’s attacks
during this process, the pain, and my veins rolling on them. They used a small
needle as my skin in this area is tight. Once the IV was placed, I warmed my
body with a warm electric blanket and mittens. Once I was done with the IV
supplementation, my body was warm and I was tired for about 2 days after the IV
Therapy.
After that, my body had adjusted to the
nutrients it was given. I also increased my supplementation of added nutrients
and continued taking Vegan Shakeology to get the added antioxidants, nutrients,
and protein in my diet to prepare my body for surgery.
In February 2017, my immune system was not
functioning correctly and my primary care physician, Dr. Eric Ehle did a
N.A.E.T. Treatment with Laser Acupuncture and Auricular Acupuncture to try to
desensitize my body from the different allergies and allergies to the metals.
This procedure began to make me drained and very fatigued.
He recommended that I have a GI Stool test done
as I was having GI issues in February 2017, to check for parasites, pathogens,
bacterial flora, and fungi/yeasts. The results showed that I had a Bacterial
Pathogen called Salmonella, high amounts of normal bacterial flora, called
Enterococcus spp. and Escherichia spp., 2 parasites called Dientamoeba fragilis
and Endolimax nana, and 2 types of fungi/yeasts called Candida spp. and
Geotrichum spp. The doctor recommended that I take Tanelbit and Phytostan to
get rid of the Candida as that was the main concern at the
time.
In March 2017, Dr. Bryan Bailey, D.D.S. an Oral
Surgeon in Amarillo, TX removed my 4 oral implants, the rest of the screw that
was left in my mouth in June 2016, and the crowns that covered 5 of my front
lower teeth. The metals in my mouth had corroded and were described as if I had
a car battery in my mouth with the electrical currents and saliva.
I had significant bone loss in my lower
mandible once again. My dentist constructed a temporary partial plate made out
of nylon and plastic to see if I noticed a difference after the metal was all
removed.
I used a homeopathic protocol before and after
surgery to help with pain and used TRF 350 and Strontium to supplement my body.
My body has healed very well and I have continued supplementation to help build
my immune system back up. I also had a very dry mouth before this surgery and
now I don’t have a dry mouth.
As of right now, I feel as though I am on the
right track to healing and I would like to see more research being done to use
Food as Medicine and more knowledge from doctor’s as to how to work with those
of us that have Scleroderma to increase our quality of life without giving us
another medicine to put a band aid on the symptom. Help us as patients learn to
manage the symptoms in ways that are beneficial to our bodies as a whole!
My 3 biggest current challenges due to my
diagnosis?
Gastrointestinal problems causing a compromised
immune system due to leaky gut and figuring out what is best to rebuild my
immune system to heal and staying away from foods that cause
allergies
Raynaud’s Phenomenon with red, white, and blue
fingers with cold, pain, and stress along with swelling in my fingers and hands
causing my hands to be tight and mottled in color with dry cracked cuticles and
red dots along my cuticle lines
Bone loss due to dental problems
What are your 3 top
tips for living with your diagnosis?
Research your
diagnosis and how to manage your symptoms holistically. Be your own advocate
and keep searching for the best way to care for yourself
Live simply by
learning to say no to stressful situations and pray and trust that God will
heal you
Manage your symptoms
consistently and follow-up with annual tests and your doctor to get the best
care
What are you 3 wishes
for the future?
Doctors, Specialists,
& Dentists that know how to care for their patients by looking at the patient
as ‘a whole’, and seeking out the root cause and finding ways to care for them,
instead of just giving medicine to put a band aid on the symptom to avoid
car-ing for the individual patient.
There would be a cure
using food as medicine and a known cause of why the dis-ease affects those with
the disease
Health Insurance
would cover what is needed to benefit those of us dealing with the disease as
that causes unneeded stress and makes symptoms worse
Huge thanks go to
Kelli for sharing her scleroderma reality and experience in such detail, for
scleroderma awareness month. Kelli has shown huge tenacity with ensuring she
has the best medical team around her, as well as, thanks go to Kelli for all
that she does for sharing her experience, to help other patients, throughout
the year.
I had the honour of
being a member of the medical team who devised the NHS Guidelines for Digital
Ulcer Management in Scleroderma, published 2015. Click here
To read more about why I chose ‘Patient Profiling and
Research’ as the focus of my 2017 campaign, Click here
Why Research and Patient Profiles? Scleroderma Awareness
Month 2017, Raynaud's, Rare Autoimmune Disease, Click here
INDEX to Scleroderma
Awareness 2016 Campaign, Click here
June 2016.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
Rare
Disease Day is a fantastic opportunity for the entire rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides –
Medical
Research provides the brightest light
for the illumination of the rare disease
patients’ plight.
I
highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
VIDEO
VIDEO
Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, Click here
The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th May 2018. Browse the
program, here
This year, I am celebrating 20 years of being a
patient at this world leading expert specialist research centre.
 |
| Sept 2017 |
I am eternally grateful to the global scleroderma
trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and
dedication to unlocking the scleroderma enigma, is nothing other than,
superhuman.
I am truly humbled and inspired by their work
ethic. I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004.
1st March 2004, I qualified as a self
employed practising barrister. Further to having been told in 1997, by my
diagnosing doctor, that I was looking at a 15month prognosis.
I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
Living the dream, scleroderma style.
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
100% of your monies will be used for medical
research purposes only. No wages or admin costs. Thank You.
#HOPE
Last Update: April 2018
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