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Adjusting to a diagnosis of chronic illness often comes with a sense of loss and grief usually as a result of the drastic lifestyle changes that accompany such diagnosis. This sort of overhaul in one’s life and having to deal with symptoms, combined with the thought of dealing with the illness forever triggers feelings of depression.

On October 10th, the world celebrated WORLD MENTAL HEALTH DAY. The theme focused on adolescents.

The following are some key facts provided by World Health Organization:

• One in six people are aged 10–19 years.
• Mental health conditions account for 16% of the global burden of disease and injury in people aged 10–19 years.
• Half of all mental health conditions start by 14 years of age but most cases are undetected and untreated.
• Globally, depression is one of the leading causes of illness and disability among adolescents.
• Suicide is the third leading cause of death in 15–19 year olds.
• The consequences of not addressing adolescent mental health conditions extend to adulthood, impairing both physical and mental health and limiting opportunities to lead fulfilling lives as adults.
• Mental health promotion and prevention are key to helping adolescents thrive

So many people struggling with chronic illnesses such as Chronic Kidney Disease and Kidney failure suffer depression as well. Although any illness can trigger depressed feelings, the risk of chronic illness and depression gets higher with the severity of the illness and the level of life disruption it causes. The risk of depression is generally 10-25% for women and 5-12% for men, however people with a chronic illness face a much higher risk – between 25-33%. Risk is especially high in someone who has a history of depression. (WebMD)

Good news is there’s treatment available for depression. Talk to your health care team if you experience any feelings of depression.

Some Tips for Improving Mental Health Include:

1. Manage and reduce stress levels
2. Get regular exercise
3. Cultivate a sense of belonging
4. Seek help and support others to do the same
5. Educate yourself – learn as much as you can about your condition
6. Try to keep doing the things you like to do
7. Offer compassion

• Highlight the actions that individuals can take to prevent and control CVD
• Drive action to educate people about controlling risk factors (such as tobacco use, unhealthy diets, physical inactivity)

Below are slides that educate on how heart disease and kidney disease are connected.

Tampa, FL – The American Association of Kidney Patients (AAKP), the nation’s oldest and largest, fully independent kidney patient organization announced plans to join patient research efforts for The Kidney Project. The Kidney Project is a cutting-edge national research initiative that is accelerating the creation of a small, surgically implanted, and free-standing bio-artificial kidney to treat End Stage Renal Disease (ESRD).

Alongside Kidney Project leads Dr. Shuvo Roy, PhD, Technical Director at the University of California, San Francisco and Dr. William H. Fissell, MD, Medical Director at Vanderbilt University; the AAKP Center for Patient Research and Education will provide valuable patient insights. Initially, AAKP will deploy a comprehensive online survey to obtain unique qualitative and quantitative data on patient preference, perception, and risk tolerance for new and innovated therapies such as wearable and implantable devices.

Founded in 1969, AAKP has a legacy of supporting private, non-profit and public sector innovations in kidney care treatment and has significantly expanded its capacities to support innovation through a robust and highly diverse national kidney patient database.  AAKP works closely with Federal government payors, regulators and quality experts to help officials understand patient needs and risk tolerance. AAKP has conducted significant patient-centered research for multiple Federal agencies and medical professional societies.

“The AAKP partnership with The Kidney Project formalizes an already strong relationship among Dr. Shuvo Roy and Dr. William H. Fissell, AAKP leadership and our Center for Patient Research and Education. Kidney patients refuse to settle with the dialysis status quo and want a substantive role in bringing artificial implantable technologies into the market since these devices could better enable them to pursue their aspirations, including full-time work.” stated Paul T. Conway, AAKP president. Conway is a transplant recipient and a former Chief of Staff of the U. S. Department of Labor.

“With the severe shortage of donor kidneys, the vast majority of ESRD patients must rely on dialysis. The bio-artificial kidney will provide these patients an alternative treatment that will free them from the tether of a dialysis machine and allow them to eat and drink freely,” said Dr. Fissell. Dr. Roy added, “The unique construction of the implantable device using silicon membranes will provide continuous removal of toxins from blood and also alleviate the need for immunosuppressants”.

“Dr. Shuvo Roy and Dr. Fissell are vigorous patient advocates dedicated to transforming kidney care for current patients and those yet to be diagnosed.  AAKP is committed to helping The Kidney Project navigate policy issues within the Executive Branch and Congress necessary to make this effort a reality,” stated Richard Knight, AAKP Vice President and Chair of Public Policy. Mr. Knight is a transplant patient and a veteran of Capitol Hill, with experience working on business and health issues with the Congressional Black Caucus.

For more information on The Kidney Project, please visit www.pharm.ucsf.edu/kidney and for information on patient research opportunities with AAKP, please visit www.aakp.org/research.

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The Iya Foundation MENA Academic Scholarship for Dialysis Patients is now accepting applications now through September 31st 2018. Click on the following link for a copy of the requirements MENA Flyer-2b. Click the following link for the French version MENA Flyer-2b-French Version

Transferring knowledge through awareness is a core objective in the altruistic mission of The Iya Foundation Inc. We approach wellness from a holistic perspective and see health as wholesome when all aspects including mental and social are in sync with the physical well being of a person.

At The Iya Foundation, we believe in EDUCATION. Hence, giving someone a chance at acquiring knowledge is of utmost importance to us.

Today, we are excited to be providing this opportunity to dialysis patients in Cameroon who happen to be dealing with many challenges just be being dialysis patients.

In addition to the prizes, winners will have the priviledge of being honored as brand ambassadors for The Iya Foundation. Good luck to all applicants. 

For additional inquiries, email info@theiyafoundation.org

By Iya Bekondo-Granatella, Founder of the Iya Foundation Inc.

Introduced in 2017, the Dialysis PATIENTS Demonstration Act (H.R. 4143 / S. 2065) is a bill that promises a demonstration program for the provision of integrated care to Medicare beneficiaries with End-Stage Renal Disease (ESRD). In this case, the acronym PATIENTS means Patient Access to Integrated-care, Empowerment, Nephrologists, Treatment, and Services. This bill, pioneered primarily by large dialysis organizations (LDOs), proposes an alleged value based integrative care program that claims patients will experience reduced hospitalization, optimize medical use and efficacy, and improve the overall outcome in the quality of care of patients. Essentially, the bill mandates a new way of delivering care by allowing dialysis organizations to create organizations that are responsible for 100% of services that dialysis patients need with payment on the basis of Medicare Advantage Capitated rates. Although the bill seems fair on the surface, it really is NOT. Not only is it coined to significantly compromise patient access and referral to organ transplantation, it is detrimental to patient centered care, disadvantageous to nonprofit and smaller dialysis organizations, and risks robbing patients of their rights and choices.Therefore, patient centered organizations like the American Association of Kidney Patients, and the Iya Foundation along with top national kidney patient advocacy organizations like the American Society of Nephrology, American Society of Transplantation, American Society of Transplant Surgeons, Association of Organ Procurement Organizations, Dialysis Clinics, Inc., amongst many others OPPOSE this bill. The following are some of the key reasons why these entities OPPOSE the PATIENTS Demonstration Act:

• Restricts Patient Voice and Choice: based on this bill, patients will be automatically enrolled into an organization, with only 75 days to opt out of it. Unfortunately 75 days is not enough time to make such an important decision for an already traumatized and fragile patient who is probably still dealing with the life changing diagnosis of having to deal with ESRD for the rest of their life. More so, the ability for patients to choose their own providers serves as an added incentive for innovation and improvement in the quality of care delivered by providers. Stripping this power from patients restricts their patient voice and choice.
• Exacerbate Existing Silos of Care: this bill focuses only on dialysis and does not look at uphill management and slow down progression of chronic kidney disease. It claims to incorporate integrated care but does not include CKD care, palliative care, medical management, and hospice – all of which are critical services. Instead, the program requires that a patient leave the organization if that kind of care is needed.
• Creates Dis-incentives for Transplantation: transplantation is a highly complex surgical procedure. Under this proposed law, LDOs will be in charge of transplant coordination. The irony in this is that, most of them make more money with patients on dialysis as opposed to transplantation hence there won’t be much incentive for them to recommend transplantation to patients who need it. This is because, for every successful transplant, an Organization’s Medicare payment will be reduced by about $80,000; a massive cut on their profits.
• Infringe on the Patient-Physician Relationship and Disrupting Care: With this program, patients are assigned specific nephrologists who are part of an organization’s select network. This causes a problem as nephrologists who are not part of these networks, will be prohibited from seeing patients in those units, thereby disrupting the patient-physician relationship and subsequently the quality of care of patients.
• Risks Eliminating Non-profit and Small Dialysis Providers: Under this act, dialysis organizations will be allowed to acquire or create insurance companies with little or no effort, allowing them to be the at-risk entity of Medicare Advantage Plans. Essentially, they will be allowed to bare full-risk (100%) for the care of ESRD patients or partner with an entity that can. What this kind of capitated risk does is that it puts nonprofits and smaller dialysis providers who cannot come up with 100% of the cost of services to the patients at risk of closing. This also limits patient access to the unique and high quality care often provided by these smaller facilities.

As you can see, the only people who stand to benefit from this bill are Large Dialysis Organizations who clearly did not consider kidney patient needs as a priority. The Iya Foundation Inc. joins the oldest and largest patient centered independent kidney organization, American Association of Kidney Patients, and the nation’s top kidney patient advocacy groups to prevent this bill from going through. Join us by signing the petition here or click on the following link http://aakp.org/action-center/

References from www.aakp.com

By Iya Bekondo-Granatella, Founder of the Iya Foundation Inc.

[Washington D.C. June 22^nd 2018] The American Association of Kidney Patients partnered with the Renal Physician Association for Capitol Hill Day, commonly referred to as Hill Day. Hill Day is a day kidney patients and their health care providers convene to inform elected officials and policy makers about key issues that affect them. Founded in 1969, the AAKP is the oldest and largest independent kidney patient organization in the U.S.A. They often conduct national education programs designed to better inform kidney patients, caregivers, and policy makers about the true impacts of kidney disease, prevention efforts, and treatment methods (AAKP website). The RPA on the other hand, is a group of nephrology healthcare providers who are devoted to improving the care of patients with kidney disease and related disorders. As indicated on their website, the RPA includes as part of their core principles the belief in facilitating of high quality, efficient and ethical renal care, and in promoting the leadership role of the nephrologist (kidney doctor) in defining renal care policies and practices. Hill Day therefore serves as a suitable platform where these two separate entities come together as one voice to speak on issues that affect them. The ultimate goal of Hill Day is to secure cosponsoring and/or gain original sponsoring from Senators and House Representatives on legislations that affect the kidney community.

As a 12+ year kidney recipient living with kidney disease for almost 29 years, being diagnosed as a child, it was an honor for me to be invited to this year’s June Hill Day as a patient and kidney health advocate with The Iya Foundation and a Field Ambassador for the AAKP; to speak on behalf of myself as a patient, and more importantly for all patients in general on such an esteemed national platform. Thank you AAKP

With Rob Blaser

Congressman Ami Bera

This year’s Hill Day began with a morning brief at the Marriot Marquis Hotel in Washington D.C. where attendees were prepped on issues to be discussed with their elected officials as well as a general housekeeping on what to expect, tips for a successful meeting, and how to effectively follow up with their Senate and/or House Office. This brief was conducted by Mr. Rob Blaser who has worked with RPA since September of 1997 and is currently serving as its Director of Public Policy since October 2003. Prior to that, Rob was their Director of Federal Affairs. As part of the brief, attendees got to hear a motivational word of encouragement from Congressman Ami Bera, M.D., a democrat and internist from Sacramento, California. Congressman Bera focused on the need for physicians to use their status as doctors and community leaders to help influence change in the policies that affect them. He emphasized to all present that now isn’t the time to be passive and that all present needed to raise their voices to influence and impact change. 

With RPA Members

The brief was a work and eat meeting with an elaborate breakfast served. Attendees were seated based on the states they represented, which was also reflective of the states of the elected officials they had been assigned to meet with. Coming from New Jersey, I had the opportunity to meet and sit with Dr. Lawrence Weisberg, Head of the Division of Nephrology of the Cooper Health System in Camden, NJ. Dr. Weisberg is also the current chair of RPA Nephrology Coverage Advocacy Program (NCAP) and a member of the RPA Board of Directors. Being a first timer to Hill Day, I was paired with Dr. Weisberg for two of my meetings which he served as chaperone; after which, the training wheels had to come off, and I would tackle the rest on my own :). Dr. Weisberg was of course a great chaperone, and did an awesome job in clarifying some of the complexities of certain legislations, as well as turned out to be a great guide in navigating between the Senate Offices and House of Representatives. Without which, I would have been totally lost. Thanks Dr. Weisberg

Following the brief which went from 7am to about 9am including time for breakfast and registration, was the travel to Capitol Hill where we would meet with the different elected officials at prescheduled meetings. Note that in the days prior, we had been provided with summaries of the legislations that would be discussed as well as a schedule for the day.

My first meeting was scheduled for 10.30am with Senator Robert Menedez, a democrat from NJ. Together with Dr. Weisberg, we left the Marriot at about 10am for an approximate 15-minute taxi ride to the Senate’s office. Meeting with Legislative Assistant, Swarna Vallurupalli, we shared our stories from a patient and physician perspective to emphasize and drive home the issues we were presenting with the intent that she would pass it on to the Senator, who we hope would either cosponsor an existing bill and/or become an original sponsor to a new bill being presented. Coming from NJ, we further stressed on the fact that, of the 30million people living with End Stage Renal Disease in the U.S., NJ was amongst the top states with the most prevalence of the disease. This is especially considering the demographic of NJ which happens to be a very diverse state with large populations of blacks and Hispanics; who unfortunately are genetically predisposed to Chronic Kidney Disease, hence are at higher risks of getting kidney failure. That being said, this meeting only lasted about twenty minutes, yet we hope Swarna would be informed and influenced enough to reflect in her notes our proposals, which we pray will be accurately passed on to the Senator and someday result in a favorable outcome for the renal community.

With Dale Singer

Dr. Ron Hyde and Dr. Lawrence Weisberg

With Dr. Faten Ayyoum

My next meeting was scheduled for 2pm; hence I had some free time to play with. Dr. Weisberg and I decided to go to the break room at the House of Representatives where the RPA had set up snacks and beverages for attendees to rest and nibble in between meetings. At the breakroom, we got to engage in conversations and shared feedback on our meetings as well as discussed on other issues of interest. During this time, I was privileged to get to have a chat with Mrs. Dale Singer, Executive Director of the RPA since 1995, as well as Dr. Ron Hyde from Arizona, fellow advocate and transplant recipients, Attorney Carlos Cristi, and Austin Lee. I also got to enjoy a girly chat with Dr. Faten Ayyoum, RPA member and nephrologist from Michigan, who shared some great personal advise with me.  Lots of thanks to my girl Faten

With Dr. Weisberg

With Roberto Sada

At about 1.30pm, Dr. Weisberg and I left for our 2pm meeting with Senator Cory Anthony Booker, a democrat from NJ. Meeting with Legislative Correspondent Juan Gomez; the forum went similar to the first meeting, lasting only about twenty minutes as well, and leaving me just enough time to get to my next meeting scheduled for 3pm with House Representative Frank J Pallone, also a democrat from NJ-6. Meeting with Legislative Assistant Roberto Sada, I got to do this meeting alone. After the first two meetings with Dr. Weisberg as chaperone, and with a better understanding of the Legislations and what we were seeking to adopt, I had actually gotten the hang of things, and conducted my meeting with Roberto quite well. While other people had different schedules and meetings with their respective elected officials, my day had come to an end with the close of this meeting. I felt fulfilled

Together, we had used our voices to plant seeds which we hope would yield policies that would positively impact the renal community. Being empowered and provided with a platform to speak on a national level on behalf of all patients, current and future; this experience was very personal, encouraging, and instrumental to me not only as a patient but also in my duty as a kidney health advocate. The significance of the little efforts and sacrifices of today towards a process that can be long and slow before a positive outcome is established cannot be minimized or underestimated. Advocates from both parties must not give up nor relent in their efforts.

Events like Hill Day serve as the ideal platform to better communicate with legislators on pertinent issues affecting the renal community in a positive way. While the RPA provides the renal healthcare providers who are in the best position with an in depth knowledge of the profession; equipped with a better understanding of their patients and what they need, the AAKP provides patients and their stories and experiences to form an alliance which together will influence change in the right direction that will help both nephrologists and the patients who are affected by kidney disease. Partnerships of this sort are especially important in engaging and creating impact primarily because nephrology is a part of medicine that is heavily regulated. Therefore, to be able to propel change in the right direction, the people involved need to be able to speak to those who are making critical decisions about issues that affect them. Hill Day, through RPA Advocacy in partnership with the AAKP, served this purpose.

The areas of focus for this particular Hill Day included the following:

• Living Organ Donor Protection Act (H.R. 1270)
• The Local Coverage Determination Clarification Act (S. 794/H.R. 3635)
• The Chronic Kidney Disease Improvement in Research and Treatment Act (S. 1890/H.R. 2644)
• The Immunosuppressive Drug Coverage (no introduced bill yet)

While the meetings went well, it is our ultimate hope that our efforts and sacrifices through our voices and presence; we would have secured or laid the ground work for co-sponsorships and original sponsorships with the Senators and House of Representatives on issues that interest the renal community, and would someday result in favorable outcomes for the patients and those who care for them. The good news according to an overall feedback from RPA,  is that many of the offices indicated their intent or interest in either cosponsoring existing legislations or becoming an original sponsor, as in the case of the Immunosuppressive Drug Coverage proposal.

On a personal note, Hill Day for me was hectic, exciting, and indeed fulfilling. Having to speak on behalf of a whole community of patients and their healthcare providers was a huge responsibility yet a Blessing. Not even the rain that poured all day, could take away from the impact of this day. I am especially thankful to Dr. Weisberg for sharing his umbrella with me all though the back and forth travel of going to the Senate and House Offices. I believe it was showers of blessings as we both got soaked on the sides unshielded by the single umbrella, yet we got to bond over our experiences. I got back to the hotel tired, and ready for a nap

With Erin Kahle

With Attorney Carlos Cristi

With Austin Lee

Although I got to see some of the AAKP staff and other Field Ambassadors only briefly during the morning brief it was indeed nice to see them again in DC. Paul Conway, Richard Knight, Erin Kahle, and Dave White were familiar faces I had recently met at the annual AAKP patient meeting in Florida and others like Austin Lee, and Carlos Cristi I got newly introduced to. I also got to meet Diana Clynes, Executive Director of the AAKP. Although I didn’t formally get to meet Melissa Bensouda I was introduced by fellow advocate and friend to Melissa, Nichole Jefferson of her presence with her daughter. We later connected over social media

It was a long read, so if you’ve made it this far, applause to you. I hope it was worth the time, and I hope you actually got a feel of Hill Day and what it is all about. Let me know what you think, or better yet, share your Hill Day experience Also enjoy some sights I was able to capture around the Capitol Hill.

Group Picture of AAKP Ambassadors and Staff

By Iya Bekondo-Granatella, AAKP Field Ambassador and Founder of the Iya Foundation Inc.

[June 8^th – June 11^th] I had the privilege of attending the 43^rd Annual National Kidney Patient Meeting hosted by the American Association of Kidney Patients (AAKP) in St. Petersburg, Florida. This event is the largest kidney patient education and advocacy meeting held in the U.S. and brings together patients, caregivers, advocates, healthcare providers and researchers alike. As a newly appointed Field Ambassador of the (AAKP), this was my very first patient meeting. To say the least, it was all of sensational. Not only did I get to connect with so many other advocates, most of whom I had only interacted with online; but I also got to learn so much from the different informative and educational sessions.

Beforehand, potential attendees were given the opportunity to choose topics of interest they would like to sit in on at the various seminars and lunch with expert sessions; a program which I particularly enjoyed as it was more casual, engaging, and highly interactive. The general session presentations were also quite informative and impactful especially to me as a patient, kidney health educator and advocate.

Fortunately, I was able to attend the general session presentation by Dr. Robert Star, who talked about some of the medical advancements in the pipeline that would improve the care of kidney patients. Of particular interest to me was his mention of precision medicine to develop treatment plans for kidney patients using renal biopsies. The current approach to treatment is a one-size-fits-all approach that can be very successful for some patients but not so much for others. The innovative approach of precision medicine takes into account individual differences in people’s genes, environments, and lifestyles. It gives medical professionals the resources they need to target specific treatments of the illnesses people encounter and helps develop scientific and medical research. According to Dr. Star, a personalized approach to renal biopsy will improve patient diagnosis and ultimately their treatment option plan. I am excited about all that could become of this approach.

A launch with expert session with Dr. Star further answered a series of my questions on Acute Kidney Injury, while during another lunch with expert session, I had the opportunity of meeting Mr. Joe Karan from the National Kidney Foundation who shared with us some of the different financial resources available to assist kidney failure patients. It was quite informative.

I also learnt a lot from Dr. Lee’s presentation on our different kidney related lab tests and Mr. James Myers session on using Social Media to raise awareness. A tour of the exhibit hall introduced me to Third Kidney Inc. founder Dr. Raymond Keller Jr, DO who is in the process of developing an innovative approach to reducing the amount of time patients get to spend getting treatments on their dialysis machines. According to his idea, by substituting an hour for hour on an alternative therapy such as medical saunas, patients wouldn’t need to sit for the full current average of 4 to 5 hours getting treatment on their dialysis machine. Instead, part of that could be substituted with a sauna therapy according to Dr. Keller.  Although saunas are not yet approved by the Food and Drug Administration for the treatment of advanced stages of neither kidney disease nor any other human disease, this is an idea that does sound promising and may make renal replacement therapies a bit more desirable if approved.

One of the most important and worthy take home lessons for me was getting informed about the Apolipoprotein L1 (APOL1) gene and its association with disease nephropathy in blacks and African Americans, from Vice President of the AAKP Mr. Richard Knight and seasoned advocate and AAKP Field Ambassador, Ms. Nichole Jefferson. Further research on this gene from the National Institute of Health website, taught me the following:

• APOL1 is associated with sickle cell disease nephropathy
• APOL1 gene variants associate with hypertension-attributed nephropathy and the rate of kidney function decline in African Americans
• End-stage renal disease in African Americans with lupus nephritis is associated with APOL1
• APOL1 variants associate with increased risk of CKD among African Americans
• High population frequencies of APOL1 risk variants are associated with increased prevalence of non-diabetic chronic kidney disease in the Igbo people from south-eastern Nigeria.
• APOL1 allelic variants are associated with lower age of dialysis initiation and thereby increased dialysis vintage in African and Hispanic Americans with non-diabetic end-stage kidney disease.
• APOL1 variants associate with increased risk of CKD among African Americans
• APOL1 Risk Alleles Are Associated with Exaggerated Age-Related Changes in Glomerular Number and Volume in African-American Adults: An Autopsy Study
• APOL1 Risk Variants are strongly associated with HIV-Associated Nephropathy in Black South Africans
• APOL1 variants increase risk for FSGS and HIVAN but not IgA nephropathy

Whether it was chatting with Mr. David White on his fitness journey topping 2000 pushups weekly, with Chef Oliver Hale on preparing for the upcoming Transplant Games of America, or my amazing time and conversation with 30+ years kidney survivor Mr. James Trabilsy and his partner Donette, getting to meet renown writer and kidney blogger Ms. Gail Rae-Garwood, and Mrs. Amy Staples, getting to know The Forever is tomorrow founder and lifelong kidney survivor, Mr. Scott Burton, and seasoned advocate Mr. Curtis Warfield, or just hanging out with Ms. Nieltje Gedney, Ms. Anjelica Nichol Leonard and Ms. Vanessa Evans discussing home hemodialysis, the ladies at ALL Kidney Patient Support Group, Ms. Cheryl Sage and Mrs. Janice Starling who cracked me up on being cool and connected, or a quick catch up with Mr. Adrian Miller, Ms. Glory, and Ms. Melissa Tuff, and getting inspired by Mr. Patrick Gee on his award winning work on advocacy; it was indeed a sensational feeling for me. It’s not every day you get to meet the President and Vice President of an outstanding organization like the AAKP, yet I got to and actually had a chat with Mr. Paul Conway and Mr. Richard Knight respectively.

The AAKP is indeed a Patient Centered, Patient Focused Organization and really did create a platform for attendees to gain information and advocacy skills they need to understand their condition, as well as make informed choices regarding their care. The event further provides an opportunity for attendees to learn how to become even more effective in using their voices and experiences to improve access and quality of care for kidney patients and also to influence public policy decisions; as clearly stated on their website.

Thank you so much for introducing me to this opportunity Ms. Erin Kahle, Director of Stakeholder Operations at AAKP, and it was so nice to meet you Ms. Deborah Pelaez, Marketing Communications Manager at AAKP. You all did a great job putting together a phenomenal event, and I am so glad to have been a part of it.

The best part of this entire experience was doing so with The Iya Foundation Inc. board member and self-proclaimed kidney awareness Green Queen, Ms. Wele Elangwe. Not only did we get even more inspired in the work we do with The Iya Foundation through this patient submit, but we are more motivated to take upon new challenges in patient engagement and community impact through awareness and education on chronic kidney disease and organ transplantation.

It wouldn’t be fun if it was all work and no play right? Hence, being in Florida, we were able to take advantage of the sunshine by visiting the beautiful pool at the Vinoy Renaissance Hotel where the event was hosted, and also enjoyed some sightseeing on board the Clearwater dinner boat cruise about 30miles away from the event space.

References

https://theiyafoundation.org/, https://aakp.org/mission/, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4562465/, http://www.thirdkidney.net/mission

At the Vinoy Lobby

Posing at the Vinoy Lobby

Posing at the Vinoy Lobby

With Ms. Wele onboard the dinner cruise

Beautiful sunset onboard the dinner cruise

With Mr. Dave White and Ms. Wele Elangwe

With Mr. James Trabilsy

With Dr. Robert Star (L) and Mr. Paul Conway (R)

With Mr. Scott Burton, Founder of the Forever is Tomorrow Foundation

With Mr. Richard Knight, V.P. of the AAKP

With Melissa Tuff

With Mr. Joe Karan of National Kidney Foundation

With Ms. Nichole Jefferson

With Ms. Cheryl Sage (L) and Ms. Janice Starling

With Mr. Richard Knight (L), Dr. Robert Star (C), and Mr. Paul Conway (R)

With Mr. Richard Knight

Posing next to the AAKP Field Ambassador Poster

My Papa, in dapper shades surrounded by some of his love ones.

By Iya Bekondo-Granatella, Founder of the Iya Foundation Inc.

Its been over 10 years since I lost my Papa. Every so often I think about him and what our relationship would have been like as mature adults. When I face challenges with men, I miss him even more so as I yearn to seek his advise. What would Papa say? What would Papa think of this? I really do wish my Papa was still here to celebrate my milestones and achievements and also just to reassure me that all is indeed well. I am however consoled by the fact that I strive to perform my very best in all that I do, and believe that wherever he is, he’s smiling down on me with pride.

1. Eat Healthy – eating a wide variety of foods can help get all the vitamins and minerals the body needs. Adding at least one fruit and vegetable to every meal.
2. Get Moving – choose activities that you enjoy doing so you can stay motivated.
3. Make Prevention a Priority – Many health conditions can be prevented or detected early with regular check ups from your health care provider. Easy detection saves lives. Regular screenings may include blood pressure, cholesterol, glucose, prostate health, and more.

Checkup and Screening Guidelines for Men. Image Credit: Men’s Health Network

For more information on men’s health, visit the following websites:

http://www.menshealthresourcecenter.com

http://www.who.int/news-room/facts-in-pictures/detail/diabetes

In the past couple of years, The Iya Foundation has funded an Epogen program at the Buea Regional Hemodialysis Clinic in Cameroon, Africa. Approximately sixteen (16) patients have benefitted from this multi-million francs cfa project. This program is an ongoing program and is being implemented this year as well. To help fund this program, click here.

What is Epogen and Why is it so Important?

Epogen is a prescription medicine that acts like the hormone Erythropoietin which is primarily produced by the kidneys and plays a key role in the production of Red Blood Cells (RBCs). RDCs are very important because they carry oxygen from the lungs to the rest of the body. Epogen therefore helps the body to create more RBCs which in turn increase the hemoglobin levels in the blood. In Chronic Kidney Disease (CKD) patients on dialysis, Epogen is used to treat Anemia.

Image Credit – National Institute of Health

What is Anemia and How Does it Relate to Chronic Kidney Disease?

According to the National Institute of Health, Anemia is a condition in which the body has fewer red blood cells than normal. Although anemia may begin to develop in the early stages of CKD when a person only has 20 to 50 percent of normal kidney function, it tends to worsen as the CKD progresses. Therefore, most people who have total loss of kidney function or kidney failure, unfortunately also have anemia.

This is because, diseased or damaged kidneys do not make enough Erythropoietin. As a result, the bone marrow makes fewer RBCs which then causes anemia. When blood has fewer than normal RBCs, it deprives the body of the oxygen it needs, leading to other health complications.

Anemia in CKD patients is also caused by blood loss during hemodialysis treatments and blood testing, as well as low levels of Iron, Vitamin B12, and Folic Acid. These nutrients and vitamins are needed to make RBCs and Hemoglobin, but because patients on dialysis don’t usually get enough from their diet, they remain highly at risk of anemia.

What are Signs and Symptoms of Anemia?

Signs and symptoms of Anemia, especially in someone with CKD include:

• Fatigue
• Weakness
• Headaches
• Problems with concentration
• Paleness
• Dizziness
• Difficulty breathing or shortness of breath
• Chest pain
• Poor Appetite
• Trouble sleeping
• Rapid heartbeat
• Feelings of depression

How is Anemia Diagnosed and Treated?

To confirm a diagnosis of Anemia, a healthcare provider will assess the medical history of the patient, perform a physical exam, and order blood tests. Blood tests for anemia usually include:

• Hb (hemoglobin) – to show if RBCs are carrying enough oxygen throughout the body
• TSAT (transferrin saturation) – to measure the amount of iron in the blood
• Ferritin – to measure the amount of iron stored in the body

Depending on the cause, the healthcare provider will treat the Anemia with one of the following treatments:

• Iron – to raise low iron levels
• Erythropoietin – if tests indicate that kidney disease is the cause, a patient may be treated with Epogen
• RBC Transfusions – if hemoglobin falls to low, a RBC transfusion may be prescribed
• Vitamin B12 and Folic Acid Supplements – to treat low levels of vitamin B12 and Folic acid
• Diet and Nutrition – by eating foods containing high levels of iron, Vitamin B12, and Folic Acid, a patient may be able to increase their levels. Patients should seek guidance from their dieticians as some of these foods are also high in sodium or phosphorous which people with CKD need to limit in their diet.

Anemia if left untreated can lead to heart complications such as irregular heartbeat, harmful enlargement of muscles in the heart, and heart failure. Anemia therefore needs to be treated in order to prevent serious health problems, lessen the need for blood transfusions, and to improve the quality of life of patients by helping them feel better.

Call to Action

If you or someone you know experiences any signs or symptoms of Anemia, make sure to consult with your physician or health care provider. Visit the following websites to learn more about Anemia and Chronic Kidney Disease https://www.niddk.nih.gov/health-information/kidney-disease/anemia https://www.kidney.org/sites/default/files/12-10-4750_DBC_AnemiaManage_TalkingPoints_11F.pdf