Losing Faith in my Doctors

I haven’t posted on a regular basis due to my several admissions via the ER for debilitating pain and unregulated high blood pressure. My whole body is in pain all the time, but my left side seems to be exacerbated a little more than the rest. From the extreme joint pain to the burning painful sensations in my left arm. And as of last night, my right arm is starting to have the same burning pain as well. I’ve spoken to my doctors about it and they look at me like I am crazy. One doctor went as far as ordering an xray and a vascular ultrasound of my left arm. He stated that the results came back normal. Now all those who battle incurable chronic diseases know that there is nothing normal about us. Also, I still haven’t received an answer about what is causing the pain in my left side, front to back, under the rib cage. My husband and I feel painful nodules in those areas.

I have totally lost faith in the medical community in reference to my care. I go to them for answers and don’t recieved any. The first thing they do is put pain meds in my i.v. So, now I have reached out to the Sarcoidosis clinic in Philadelphia and a group called “The Grand Rounds”, which is a group of doctors from across America for answers. I provided them with access to all of my medical records which included all films. Both have concluded that my medical care here in my state of Delaware has been inconsistent. Testing that should have been done, wasn’t. And the fact that my physician’s were not communicating with each other, my treatments were not cohesive.

So, as you now know, not only were my doctor’s not listening to me, but they were not really treating me as an unique individual that is very sick.

I have been battling my illness’s for almost 19 years and my health has seriously declined in the last two years. I rely on 24hr oxygen support and the use of a walker to get around. I’ve congestive heart failure twice and a series of ischemic stroke’s and a lacunar stroke. I have been diagnosed with steroid induced type 2 diabetes on top of Fibromyalgia, Rheumatoid arthritis, Chronic Sarcoidosis, Periphial Neuropathy, anemia and Cushing’s. That’s a lot huh?
I am a person battling several auto immune, debilitating chronic diseases. I am fighting for my life. I am a Warrior.

20180817_153218

RARE DISEASE DAY 2/28/2018

Rare Disease Report

NORD: The Voice of the Community – February 2018

FEBRUARY 20, 2018

News from NORD and its Member Organizations – February 2018

Find Out What’s Happening in Your State for Rare Disease Day
On February 28th, people around the world will observe Rare Disease Day. To find out what’s happening around the U.S. and in your state, visit the national website hosted by NORD. Events are planned in state legislative buildings in more than 30 states to promote awareness of issues. In addition, special events are taking place on many university campuses and in schools and hospitals. Post your event here and read a state-by-state overview.

Join NORD in Rare Disease Day Tweetchat
You are invited to a tweetchat on Rare Disease Day (Feb. 28th) hosted by NORD, The Mighty and Boston Children’s Hospital to discuss “What to do if You or Your Child Receive a Rare Disease Diagnosis.” Use hashtag #RDD18Chat. The chat runs from 1 to 2 pm ET. NORD will be live-tweeting from @RareDiseases. Co-hosts will be @TheMightySite and @BostonChildrens. Special guests will include Marsha Lanes MS, CGC, Genetic Counselor and Medical Editor on the NORD staff; Phillip L. Pearl MD, Director of Epilepsy and Clinical Neurophysiology at Boston Children’s and Ashanthi De Silva, Rare Disease Editor for The Mighty.

NORD to Partner Again with The Hole in the Wall Gang Camp
Applications are available for a rare disease summer family camp in Connecticut on which NORD is partnering again this year with The Hole in the Wall Gang Camp. The camp provides a special opportunity for children and families affected by rare diseases to join together for a weekend of pure fun, free of charge. Family Camp is open to 25 families who are located in the Northeast. It will take place May 31-June 3 in Ashford CT.  Apply here.

Letter to Congress: NORD & Others Oppose “Right to Try”
NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the U.S. House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration won’t increase patient access.

“The Ataxian” Documentary to be Available to Public for Download
A documentary film featuring the cross-country bike ride of two young men living with Friedreich’s ataxia, “The Ataxian”, will be screened in Washington DC as part of the Rare Disease Day activities. In addition, it will be available to the public beginning Feb. 26. Kyle Bryant and Sean Baumstark and their team’s legendary bike ride across America are featured in the film. Beginning Feb. 26th, the film will be available on iTunes and other download sites.

NORD Advocates for Iowa Co-pay Choice Bill
NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.

NORD Submits Comments to the Centers for Medicare and Medicaid Services
NORD has been, and will continue to be, engaged in a number of activities to protect access to quality healthcare coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirementsla and a lifetime limit in its Medicaid program. Read the comments.

NEWS FROM NORD MEMBER ORGANIZATIONS
Alagille Syndrome Alliance Offers Scholarship for Students With Alagille Syndrome
The ALGSA is again offering the Alaina Kaitlyn Hahn Celebratory Scholarship for students with Alagille syndrome. Applications are being accepted now. The scholarship funds the education of high school graduates or GED credential recipients with ALGS who are enrolled in or entering an accredited U.S. university, college or vocational school and choose to pursue higher education in the human biological, medical or health sciences. Write to alagille[@]alagille[.]org and include AKH Scholarship in the subject line to request application materials.

Abstracts Being Accepted for Cornelia de Lange Syndrome Foundation Symposium
Abstracts are currently being acceptedfor the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28 in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors and research scientists.  The meeting encourages interactions between basic and clinical scientists.

Alpha-1 Foundation Awards John Walsh Translational Research Award
The John W. Walsh Translational Research Award has been granted to Joseph Kaserman MD, instructor of medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More.

Opioid Epidemic Impacts Patients With Sarcoidosis
The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release.

National Tissue Biobank Established for Coats Disease
The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More. 

MDS Foundation Hosts Family/Caregiver Forums
The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations.

One-Day Conference Planned on Effects of Necrotizing Enterocolitis on Premature Infants and Families
The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell CT on June 11 on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.”

Osteogenesis Imperfecta Foundation Plans Conference
July 13-15 will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research.

Progeria Research Foundation Scientific Workshop Planned
The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22 in Cambridge MA. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease and aging research. Information and registration.

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Rare Disease Report

NORD: The Voice of the Community – February 2018

FEBRUARY 20, 2018

News from NORD and its Member Organizations – February 2018

Find Out What’s Happening in Your State for Rare Disease Day
On February 28th, people around the world will observe Rare Disease Day. To find out what’s happening around the U.S. and in your state, visit the national website hosted by NORD. Events are planned in state legislative buildings in more than 30 states to promote awareness of issues. In addition, special events are taking place on many university campuses and in schools and hospitals. Post your event here and read a state-by-state overview.

Join NORD in Rare Disease Day Tweetchat
You are invited to a tweetchat on Rare Disease Day (Feb. 28th) hosted by NORD, The Mighty and Boston Children’s Hospital to discuss “What to do if You or Your Child Receive a Rare Disease Diagnosis.” Use hashtag #RDD18Chat. The chat runs from 1 to 2 pm ET. NORD will be live-tweeting from @RareDiseases. Co-hosts will be @TheMightySite and @BostonChildrens. Special guests will include Marsha Lanes MS, CGC, Genetic Counselor and Medical Editor on the NORD staff; Phillip L. Pearl MD, Director of Epilepsy and Clinical Neurophysiology at Boston Children’s and Ashanthi De Silva, Rare Disease Editor for The Mighty.

NORD to Partner Again with The Hole in the Wall Gang Camp
Applications are available for a rare disease summer family camp in Connecticut on which NORD is partnering again this year with The Hole in the Wall Gang Camp. The camp provides a special opportunity for children and families affected by rare diseases to join together for a weekend of pure fun, free of charge. Family Camp is open to 25 families who are located in the Northeast. It will take place May 31-June 3 in Ashford CT.  Apply here.

Letter to Congress: NORD & Others Oppose “Right to Try”
NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the U.S. House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration won’t increase patient access.

“The Ataxian” Documentary to be Available to Public for Download
A documentary film featuring the cross-country bike ride of two young men living with Friedreich’s ataxia, “The Ataxian”, will be screened in Washington DC as part of the Rare Disease Day activities. In addition, it will be available to the public beginning Feb. 26. Kyle Bryant and Sean Baumstark and their team’s legendary bike ride across America are featured in the film. Beginning Feb. 26th, the film will be available on iTunes and other download sites.

NORD Advocates for Iowa Co-pay Choice Bill
NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.

NORD Submits Comments to the Centers for Medicare and Medicaid Services
NORD has been, and will continue to be, engaged in a number of activities to protect access to quality healthcare coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirementsla and a lifetime limit in its Medicaid program. Read the comments.

NEWS FROM NORD MEMBER ORGANIZATIONS
Alagille Syndrome Alliance Offers Scholarship for Students With Alagille Syndrome
The ALGSA is again offering the Alaina Kaitlyn Hahn Celebratory Scholarship for students with Alagille syndrome. Applications are being accepted now. The scholarship funds the education of high school graduates or GED credential recipients with ALGS who are enrolled in or entering an accredited U.S. university, college or vocational school and choose to pursue higher education in the human biological, medical or health sciences. Write to alagille[@]alagille[.]org and include AKH Scholarship in the subject line to request application materials.

Abstracts Being Accepted for Cornelia de Lange Syndrome Foundation Symposium
Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28 in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors and research scientists.  The meeting encourages interactions between basic and clinical scientists.

Alpha-1 Foundation Awards John Walsh Translational Research Award
The John W. Walsh Translational Research Award has been granted to Joseph Kaserman MD, instructor of medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More.

Opioid Epidemic Impacts Patients With Sarcoidosis
The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release.

National Tissue Biobank Established for Coats Disease
The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More. 

MDS Foundation Hosts Family/Caregiver Forums
The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations.

One-Day Conference Planned on Effects of Necrotizing Enterocolitis on Premature Infants and Families
The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell CT on June 11 on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.”

Osteogenesis Imperfecta Foundation Plans Conference
July 13-15 will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research.

Progeria Research Foundation Scientific Workshop Planned
The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22 in Cambridge MA. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease and aging research. Information and registration.

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NORD: The Voice of the Community – February 2018 FEBRUARY 20, 2018 News from NORD and its Member Organizations – February 2018 Find Out What’s Happening in Your State for Rare Disease Day On February 28th, people around the world will observe Rare Disease Day. To find out what’s happening around the U.S. and in your state, visit the national website hosted by NORD. Events are planned in state legislative buildings in more than 30 states to promote awareness of issues. In addition, special events are taking place on many university campuses and in schools and hospitals. Post your event here and read a state-by-state overview.  Join NORD in Rare Disease Day Tweetchat You are invited to a tweetchat on Rare Disease Day (Feb. 28th) hosted by NORD, The Mighty and Boston Children’s Hospital to discuss “What to do if You or Your Child Receive a Rare Disease Diagnosis.” Use hashtag #RDD18Chat. The chat runs from 1 to 2 pm ET. NORD will be live-tweeting from @RareDiseases. Co-hosts will be @TheMightySite and @BostonChildrens. Special guests will include Marsha Lanes MS, CGC, Genetic Counselor and Medical Editor on the NORD staff; Phillip L. Pearl MD, Director of Epilepsy and Clinical Neurophysiology at Boston Children’s and Ashanthi De Silva, Rare Disease Editor for The Mighty. NORD to Partner Again with The Hole in the Wall Gang Camp Applications are available for a rare disease summer family camp in Connecticut on which NORD is partnering again this year with The Hole in the Wall Gang Camp. The camp provides a special opportunity for children and families affected by rare diseases to join together for a weekend of pure fun, free of charge. Family Camp is open to 25 families who are located in the Northeast. It will take place May 31-June 3 in Ashford CT.  Apply here. Letter to Congress: NORD & Others Oppose “Right to Try” NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the U.S. House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration won’t increase patient access. “The Ataxian” Documentary to be Available to Public for Download A documentary film featuring the cross-country bike ride of two young men living with Friedreich’s ataxia, “The Ataxian”, will be screened in Washington DC as part of the Rare Disease Day activities. In addition, it will be available to the public beginning Feb. 26. Kyle Bryant and Sean Baumstark and their team’s legendary bike ride across America are featured in the film. Beginning Feb. 26th, the film will be available on iTunes and other download sites. NORD Advocates for Iowa Co-pay Choice Bill NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.  NORD Submits Comments to the Centers for Medicare and Medicaid Services NORD has been, and will continue to be, engaged in a number of activities to protect access to quality healthcare coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirementsla and a lifetime limit in its Medicaid program. Read the comments. NEWS FROM NORD MEMBER ORGANIZATIONS Alagille Syndrome Alliance Offers Scholarship for Students With Alagille Syndrome The ALGSA is again offering the Alaina Kaitlyn Hahn Celebratory Scholarship for students with Alagille syndrome. Applications are being accepted now. The scholarship funds the education of high school graduates or GED credential recipients with ALGS who are enrolled in or entering an accredited U.S. university, college or vocational school and choose to pursue higher education in the human biological, medical or health sciences. Write to alagille[@]alagille[.]org and include AKH Scholarship in the subject line to request application materials. Abstracts Being Accepted for Cornelia de Lange Syndrome Foundation Symposium Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28 in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors and research scientists.  The meeting encourages interactions between basic and clinical scientists. Alpha-1 Foundation Awards John Walsh Translational Research Award The John W. Walsh Translational Research Award has been granted to Joseph Kaserman MD, instructor of medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More. Opioid Epidemic Impacts Patients With Sarcoidosis The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release. National Tissue Biobank Established for Coats Disease The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More. MDS Foundation Hosts Family/Caregiver Forums The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations. One-Day Conference Planned on Effects of Necrotizing Enterocolitis on Premature Infants and Families The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell CT on June 11 on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.” Osteogenesis Imperfecta Foundation Plans Conference July 13-15 will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research. Progeria Research Foundation Scientific Workshop Planned The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22 in Cambridge MA. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease and aging research. Information and registration. MOST POPULAR ARTICLES   Vertex Initiates Phase 3 of Triple Combination for Cystic Fibrosis   Sobi Recieves Positive Opinion for Anakinra in Still’s Disease   IFFGD Will Participate in Rare Disease Day to Support Rare Digestive Disease Patients   Does Michael Phelps Have Marfan Syndrome? Strategic Alliance Partnership Program > Infographics > SPECIALTY > Gaucher Disease Familial Chylomicronemia Syndrome Huntington’s Disease Cardiovascular Oncology Neurology MEDICINE > ADVOCACY > PARTNERS > CONTRIBUTORS > PUBLICATIONS > MJH Associates > AJMC CURE MD Magazine HRA ONCLive OTCGuide Pharmacy Times Specialty Pharmacy Times Targeted Oncology Resources About Advertise Careers Contact Us Terms & Conditions Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved. NORD: The Voice of the Community – February 2018 FEBRUARY 20, 2018 News from NORD and its Member Organizations – February 2018 Find Out What’s Happening in Your State for Rare Disease Day On February 28th, people around the world will observe Rare Disease Day. To find out what’s happening around the U.S. and in your state, visit the national website hosted by NORD. Events are planned in state legislative buildings in more than 30 states to promote awareness of issues. In addition, special events are taking place on many university campuses and in schools and hospitals. Post your event here and read a state-by-state overview.  Join NORD in Rare Disease Day Tweetchat You are invited to a tweetchat on Rare Disease Day (Feb. 28th) hosted by NORD, The Mighty and Boston Children’s Hospital to discuss “What to do if You or Your Child Receive a Rare Disease Diagnosis.” Use hashtag #RDD18Chat. The chat runs from 1 to 2 pm ET. NORD will be live-tweeting from @RareDiseases. Co-hosts will be @TheMightySite and @BostonChildrens. Special guests will include Marsha Lanes MS, CGC, Genetic Counselor and Medical Editor on the NORD staff; Phillip L. Pearl MD, Director of Epilepsy and Clinical Neurophysiology at Boston Children’s and Ashanthi De Silva, Rare Disease Editor for The Mighty. NORD to Partner Again with The Hole in the Wall Gang Camp Applications are available for a rare disease summer family camp in Connecticut on which NORD is partnering again this year with The Hole in the Wall Gang Camp. The camp provides a special opportunity for children and families affected by rare diseases to join together for a weekend of pure fun, free of charge. Family Camp is open to 25 families who are located in the Northeast. It will take place May 31-June 3 in Ashford CT.  Apply here. Letter to Congress: NORD & Others Oppose “Right to Try” NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the U.S. House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration won’t increase patient access. “The Ataxian” Documentary to be Available to Public for Download A documentary film featuring the cross-country bike ride of two young men living with Friedreich’s ataxia, “The Ataxian”, will be screened in Washington DC as part of the Rare Disease Day activities. In addition, it will be available to the public beginning Feb. 26. Kyle Bryant and Sean Baumstark and their team’s legendary bike ride across America are featured in the film. Beginning Feb. 26th, the film will be available on iTunes and other download sites. NORD Advocates for Iowa Co-pay Choice Bill NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.  NORD Submits Comments to the Centers for Medicare and Medicaid Services NORD has been, and will continue to be, engaged in a number of activities to protect access to quality healthcare coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirementsla and a lifetime limit in its Medicaid program. Read the comments. NEWS FROM NORD MEMBER ORGANIZATIONS Alagille Syndrome Alliance Offers Scholarship for Students With Alagille Syndrome The ALGSA is again offering the Alaina Kaitlyn Hahn Celebratory Scholarship for students with Alagille syndrome. Applications are being accepted now. The scholarship funds the education of high school graduates or GED credential recipients with ALGS who are enrolled in or entering an accredited U.S. university, college or vocational school and choose to pursue higher education in the human biological, medical or health sciences. Write to alagille[@]alagille[.]org and include AKH Scholarship in the subject line to request application materials. Abstracts Being Accepted for Cornelia de Lange Syndrome Foundation Symposium Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28 in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors and research scientists.  The meeting encourages interactions between basic and clinical scientists. Alpha-1 Foundation Awards John Walsh Translational Research Award The John W. Walsh Translational Research Award has been granted to Joseph Kaserman MD, instructor of medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More. Opioid Epidemic Impacts Patients With Sarcoidosis The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release. National Tissue Biobank Established for Coats Disease The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More. MDS Foundation Hosts Family/Caregiver Forums The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations. One-Day Conference Planned on Effects of Necrotizing Enterocolitis on Premature Infants and Families The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell CT on June 11 on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.” Osteogenesis Imperfecta Foundation Plans Conference July 13-15 will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research. Progeria Research Foundation Scientific Workshop Planned The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22 in Cambridge MA. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease and aging research. Information and registration. MOST POPULAR ARTICLES   Vertex Initiates Phase 3 of Triple Combination for Cystic Fibrosis   Sobi Recieves Positive Opinion for Anakinra in Still’s Disease   IFFGD Will Participate in Rare Disease Day to Support Rare Digestive Disease Patients   Does Michael Phelps Have Marfan Syndrome? Strategic Alliance Partnership Program > Infographics > SPECIALTY > Gaucher Disease Familial Chylomicronemia Syndrome Huntington’s Disease Cardiovascular Oncology Neurology MEDICINE > ADVOCACY > PARTNERS > CONTRIBUTORS > PUBLICATIONS > MJH Associates > AJMC CURE MD Magazine HRA ONCLive OTCGuide Pharmacy Times Specialty Pharmacy Times Targeted Oncology Resources About Advertise Careers Contact Us Terms & Conditions Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved. ShareThis Copy and Paste

To the Amazing Husband Behind This Chronically Ill Wife by Samantha Moss

Behind every great man is a great woman, or so the saying goes.
Let’s flip that on its head a little. Behind this chronically ill wife is an amazing husband. A husband who has become a full-time carer. A husband who has gone beyond the call of duty. A husband who has become my legs, my cleaner, my cook, my shopper, my gardener, my driver, my nurse.

A husband who holds my hand when I’m writhing in pain. A husband who heats wheat packs in the middle of the night or makes me a cup of tea in the early hours of the morning, when sleep is completely disturbed by pain.

My husband is nothing short of amazing and I don’t know how, I don’t even want to think about how, my life would be without him by my side.

We share this chronic illness journey, warts and all. He knows me better than anyone else. He can tell when I’m exhausted even before I can. He never complains at this life that has been landed in his lap. He never gets annoyed at me for my limitations. If anything he gets annoyed at me when I try to do things beyond my limitations. That’s when I frustrate him.

It’s a frustration born out of love though. It’s because he knows how much pain I will endure for stretching my limits. He speaks to me of hating what my body is doing to me and how he feels so helpless. That breaks my heart to hear him say that.

Somehow we have managed to create a world of our own that works for us. While it is an extremely limited life, it is also a full and an ever-expanding life. Most of it is spent in the four walls of our home but we are together and we create our own adventures on a daily basis. We laugh and cry together, we read together, we watch our favorite TV shows, we sit in our garden and chat as if on a beautiful date. We share the jobs around the house and keep our environment a place where we want to be.

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We also have our alone time during the day. I have my online support forum and writing commitments and my husband always has a project on the go that he potters with in his “man cave.” Although we usually only spend two or three hours apart each day that time is precious and important, particularly for a carer.

I was recently asked to write on the topic of “Partners – Where would we be without our partners?”

I have a very simple answer to that question. Lost, lonely and in a permanent residential care facility.

Thank you, sweetheart, for all you do, your devotion, care, acceptance of our situation and your unfailing love.

Words really can’t express my love for you but I hope this article will always remind you that I think you are amazing and I love you so much.

Follow Sam’s story at My Medical Musings.

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Photo via michaeljung on Getty Images

Samantha Moss
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Focus Retriever

Cardiac Sarcoidosis

Blessed just at the right moment…

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To have the feeling of loneliness countered by a moment of feeling loved is awesome. In one moment a picture of my elementary school class picture was posted on FB with a message, “Marilyn, I thought you might like this,” Isn’t The Most High wonderful?! To be contacted at that moment of utter loneliness. All of a sudden my DM was hit up with all of my closest friends that I had lost touch with. Now a meeting has been set up for all of them to come visit me for the day. Isn’t that wonderful? Feeling so blessed. 😊😋😊

Where Is My Relief?

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Waking up in pain everyday isn’t how I envisioned my life to be. Diagnosed 18 years ago and been living debilitating pain that no one could possibly handle on their own. Prescribed medicine’s do not work for my good. They just caused more problems, more pain.

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Waking up in pain is not what I envisioned my married life would be. I hurt because I can’t be the wife that my hubby Karl needs. Instead of me taking care of him, he instead takes care of me. Causing an extra burden to be placed on his shoulders because of my stupid illness hurts my heart. Watching him age before my eyes. Saddening. Hurtful. Regretful. Sorrowful. In his eyes he loves me and I am thankful. Karl honors our vows to each other. Honestly, that speaks volumes to his character. Cares for me like no other. He is a blessed man of The Most High that was created just for me. I am blessed because he chose me. Selah

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Waking up in pain each day is not what I envisioned my life as a parent to be. Diagnosed when my children were 12, 9 and 2 months respectively. Just babies themselves having to take on the role of caretaker to their own mother. Missing out on a lot because of me. Having one resent me because of it. Missing out on caring for the baby a lot because of the pain. They are 30 (KJ), 27 (Ka’miko Mai’) and 18 (Kimora-Lynn) now and I can truly say I am blessed that they chose me as mom from heaven. They make me fight each day to live. Even with the pain, I could not have made it this far without them. There are many others in my shoes that do not have the support system that I have and I pray for them everyday. But I am so thankful that my family loves me and stays in my corner. The Most High seen favor with me and blessed me with another daughter. My daughter Hadar, KJs wife, not only loves me but she is also an active advocate for me and Sarcoidosis. She helps me with my health choices and also with my life. She educates others about Sarcoidosis, making them understand what I struggle with everyday. She loves me and that is such a blessing.

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Chronic pain, living with Sarcoidosis, living with an Invisible illness, living with an incurable debilitating disease and finally, living with a rare disease; this is my life. I fight through the pain, I smile through the pain, I live through the pain.

Peace and blessings to you always Warrior’s.

 

RE: MOVIE NIGHTMARE @ Cinemark Christiana Movie Theatre Pt. 2

 


This is a follow-up to the Cinemark Christiana Movie Theatre debacle.

I called the theatre the next morning after being humiliated the night before and spoke to a representative who intern stated that I would be receiving a call from their manager (Stephanie) on Monday. Well that didn’t happen. I called this evening around 4:30 pm and actually spoke to Stephanie herself. After explaining to her how I was treated, she told me “where I was wrong.” She said that I, indeed was sitting in someone else’s seat.? Wrong! I understood the meaning of reserved handicapped seating and I was indeed sitting in a seat that I had reserved. Stephanie also stated that they sat those that was supposed to sit in our seats elsewhere, and that the usher was supposed to tell us this. NOT! LIES BEGAT LIES BEGAT LIES! Stephanie then went on to say that I had no right to raise my voice to her. I rebutted with, why Not? You are not listening to what I am trying to explain to you about what actually happened. She then apologized for her staff not alerting me to reassigning the other moviegoers Stephanie promised me a refund, in which I was prepared to give her my confirmation number so that it could be reimbursed to my card. Stephanie said that was not possible and that I had to come back to the movie theater and show her my digital receipt. Again reiterating that it would be hard for me to do so tonight because of my disability, so may I email it to her. Of course she said no. Stating that I must present the ticket in person in order to receive my refund out of their petty cash fund due to the ticket being purchased via Fandango. She said that it would be okay to send a copy of the ticket with my husband. Stephanie stated, “that if she was not there, then she would leave word with the other managers to refund my money. Hubby went there and the staff denied our refund. A manager named Carlos specifically, spoke very negatively to hubby.
I am venting this because I already deal with being handicapped because of Sarcoidosis and what it has done to my life, but to be humiliated when I was in the right for sitting in a seat designated for the handicapped. Especially, when being asked to move for those who were not. #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SarcoidosisAwareness #LivingWithChronicPain #TheRightsOfTheHandicap #Fighting4OurRights #MistreatmentOfTheHandicapped