PRP Survival Guide

Caring & Sharing

 

Editor’s Note: “She is gone. Her journey is over.” That was the message shared with the 2,103 members of the PRP Facebook Support Group. While the immediate reaction was sadness, it didn’t take long for the Land of Chat to honor Tierney’s memory.

The Land of Chat was aware of Tierney’s hospitalization. Her daughter, Samantha, posted the news on July 10. Predictably, legions of well-wishers responded  with prayers and words of support.

On August 23, however the diagnosis of leukoencephalopathy underscored the seriousness of her condition and signaled the start of a global vigil and an outpouring of support from well wishers. Those comments are also shared below.

Messages are listed below. For reasons of privacy, the names have been truncated.


She’s Gone. Her Journey is over.
Posted September 12, 2020

Patti P — Chicago, Illinois

Such a special person to suffer so much and yet be a bright light of hope for so many.

Kathryn B — Stockbridge, Georgia

I am so sorry. Tierney was there for my aunt. She answered questions when doctors could not. She was an angel here on earth.

Irma G — Newport News, Virginia

Many will miss her kindness and compassion for others.

Sam H — Morning Peninsula, Victoria, Australia

Tierney’s support and friendship from the other side of the world was something that kept my mum and I going through her PRP journey. Be at peace Tierney. A new glowing star has appeared in the sky. 

Cheryl W — Davidsonville, Maryland

Well the group won’t feel the same without her. And the world has changed with her passing. God bless her family! 

Brenda M — Kent, England

So sorry to hear this news. Dear Tierney gave each and every one of us in the PRP Family HOPE in our darkest of times. We talked for hours some nights, when she couldn’t sleep but it was daytime here in the UK. We talked about almost everything you could think of from Politics to television and what we were getting for dinner, swapping recipes and laughing at so many things… I KNOW without a doubt she loved her family above all else, she was thrilled to welcome her little grandson and was over the moon when Alex graduated and went on to such academic success. She loved her husband Charlie with a passion as she loved life itself. She will be with you all in spirit as you journey on without her. She will continue to love and support you all as you carry the memories with you each and every waking moment. Rest in Peace dear Tierney you have made such a difference in so many lives, you will be well remembered. My own PRP journey began 8 years ago which was when I found the FB group, in it’s very early days. How far it has come and so much good it has done, much of that down to our Tierney. 

Eve M — Radlett, England

Our PRP family has lost a diamond. 

Debbie R — Calgary, Alberta, Canada

Tierney fought such an amazing battle throughout this ordeal and still gave of herself unconditionally and stayed positive. Her spirit, strength and generosity will be missed. My prayers and thoughts go out to her family through this difficult time.

Leith W — Toowoomba, Queensland, Australia

Deepest condolences to the family and the PRP community she loved. A bright angel shinning in heaven. You will be sadly missed. Rest in peace.

Aimee D — Poole, England

The world has certainly lost something special. I have been following her journey for a while and it’s so sad that she fought so hard and so bravely and was still taken so soon. Inspirational though. Rest now Tierney! Thanks for all the love and support you have provided. You will be so so missed!!

Gary R — Port Perry, Ontario, Canada

So sorry to hear. She reached out to me by phone when I was at my worst and feeling down just to give me a lift. I’m sure she did the same for many. 

Connie D — Oviedo, Florida

To be absent from the body is to be PRESENT with the Lord. My Favorite verse: II Corin 4:16-18: So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal! 

Kathy D — Denison, Texas

Praying for the family, she will be missed. She was an inspiration and help in time of need to us all. 

Ruby T — Tuba City, Arizona

So very sorry to hear of journey to the spirit world. Her words of encouragement and advice has been offered many times as my husband was going through his worst of times. Our condolences and hugs for strength to her loved ones.

 Kenneth S — Medora, Indiana

Rest in Peace Tierney. On your new journey may you have fair winds and following seas. You will be missed by many. 

Trevor J — Stockton-on-Teeside, England

Very sad.Thinking of all of Tierney’s family & friends. Thank you for all the support to PRPers around the world. You made a difference.

Jennifer C — St. Augustine, Florida

My deepest condolences for your loss. She is free of pain, discomfort and has fought hard and in now at peace. Thank you Tierney for all your advice

Frank G — Fletcher, North Carolina

So very saddened to hear this. Her memory is a blessing to all on this list and beyond.

Diego T — Barcelona, Spain

Terrible lost, I’m really sorry she’s gone. She gave us this platform to meet other PRPrs, a way to share experiences, learn from others and help others. She was the first PRPr I met, and through the group I had the opportunity to meet great people, learn and humbly help other PRPrs and caregivers. She’s given us this legacy, we can help others to let them feel they’re not alone anymore, like she did with me, this could be a good tribute to Tierney.

Mohamad K — Toronto, Ontario, Canada

She was so patient and supportive when I had began my PRP journey. Rest in Peace Tierney. I am so sad to hear she is gone. My condolences to her husband, other family members and Tierney’s PRP family

Christine G — Zürich, Switzerland

Dear Tierney we will miss you terribly but finding comfort in the knowledge that you don’t have to suffer anymore and that you have spread out your wings to fly to a peaceful place. We love you so much and you will be always in our heart. Our deepest thoughts and love reaches out over the ocean to your family. 

Barb R — Delmont, Pennsylvania

Sending hugs and prayers to the family. Such a battle she fought and she did it with beauty and grace. Her inspiration to push forward with this disease and encourage others was amazing. Rest in Peace Tierney.

Jan T — Ringwood, New Jersey

I’m so sorry, Bill McCue. She was such an integral part of this group and had such an impact on all of us. I know she was your very close friend and colleague! My deepest sympathies to you, and of course her family and all her loving friends.

Rebecca H — Sherman, Texas

It was an honor to have had her for my friend. I am SO SAD.LINDY AND I SEND LOVE AND PRAYERS to Tierney’s family and all those who knew and loved this amazing person that she was. She will be missed for so many priceless reasons by so many grateful people including us. We Love you Tierney and we are so thankful to have known you for a while and to have loved you a lot. I’m so thankful you are not suffering and that you’re with Jesus. 

Stewart L — Portsmouth, Hampshire, England

OMG. I woke to this. Her suffering has ended. Such a amazing women. Always had time for others even through her own battle.

Marij B — Stein Limburgm, Nethjerlands

Indeed so sorry for your loss…our condolences. My husband got PRP in 2010 and became a member of the PRP family. Such a horrible disease . Tierney gave us so much courage to stay strong. We’ll never forget!! May she rest in Peace. Our thoughts are with you all. Life is limited, but love is inexhaustible

Paul & Sandi H — Pittsburgh, Pennsylvania

Oh Tierney, if you only knew how much you helped and inspired us ALL here in this “land of chat”. But also in our long painful days and our long desperate nights of itching and shedding and despair. You understood, and lent words of comfort, kindness and wisdom. Your battle with this disease was endless, yet you gave each of us so much hope. Thank you. Rest easy, dear Tierney. Your husband, son, and all of your family are in our most heartfelt prayers. Much love from Paul and Sandi.

Abbie C — San Antonio, Texas

She is now the guardian angel of us all.

Roberta K — Sicklerville, New Jersey

So sad to hear of Tierney’s passing. She had a purpose none of us would ever want, but she used it to help so many others. We are all grateful for her advice, concern, and knowledge she gave so freely.May her family be strengthened and comforted by those who were touched by Tierney. God’s peace.

Abbas V — London, England

That is tragic. Tierney showed superhuman fortitude and I sincerely hope we can do something lasting to remember her by. Tierney, you were loved by us and we will never forget you.

Alison L — Caroline Springs, Victoria, Australia

This is hard to believe after seeing her here for so long. A tower of strength who frequently reminded me that I had nothing to complain about. Tierney’s journey was testament to her spirit. Thoughts to her family.

Ellen H — NO LOCATION

A true Angel. Fly high. “Loss leaves a heart-ache no one can heal; love leaves a memory no one can steal.”

Leslie L — Colorado Springs, Colorado

My heart is brokenbut I am happy that Tierney is no longer suffering. She was such a blessing in my life and an inspiration to all of us PRPers !!! Thank you, Tierney, for your kindness and understanding and so much more. Also, my condolences and love to her wonderful and supportive family. I truly will miss Tierney!!!

Susan V — Cardiff, Wales, UK

Tierney always made time to help us with any questions we had even though she was going through so much herself. My sincere condolences to Tierney’s family and friends. Swill be missed so much within this group. Rest in peace Tierney.

Bronagh M — Shefield, England

This lady is a legend. She always had time for everyone and she has had such a hard time.

Rest in Peace Continued


August 23, 2020 — A Global Vigil Begins

Myrna H — Brandon, Manitoba, Canada

I have no words to express my sadness at hearing this news. She has been the back bone of the PRP Facebook Support Group. She always had words of concern and encouragement even when she was suffering. She and her family will be in my prayers. I will continue to pray for a miracle.

Karen Marie — Bethpage, New York DUPE

Tierney is the first person I talked to when I joined the PRP group at my worst times of the disease. Regardless of what condition she was in, she always tried to help me and lift my spirits. My heart feels heavy right now. My thoughts and prayers are with her and her family.

Jan T — Ringwood, New Jersey

When I joined the PRP Support Group in mid-January 2017 (after suffering without an official diagnosis since October 2016), the group was edging up to the 1000-member mark, and I will never forget the mainstays of the group at the time when I needed it the most. One of the most memorable and important sources of information and practical advice was our “mom” Tierney. I know that over the next few years as I was improving, she was experiencing many setbacks and my heart broke every time she suffered something new. I remember when she was nervous about traveling (probably to Iowa) and I finally felt I had some words of wisdom to share with our resident expert, since I had weathered a tRest in Peace at peak PRP from the east coast to the west coast for an important family wedding. If you can hear me, Tierney, I am sending all my love to you and your family. I hope you know how important you have been to my recovery. 

Ginny M — Lexington, South Carolina

Tierney as you know my mom was so excited to run to my hospital bed to say ” I found another prper! ” Thank god for AOL and dial up back then!!! You two were both online way before many. Then so many years later you surprised me by sending those conversations you had with her after she passed. We were lucky enough to have so many BITCH sessions over the years. I am completely broken. I swore to you I would come hug your neck after Covid. I hope you find my mom and hug hers 1st. Joey, Nathan , and Lauren all thank you for the love and support over the years. It is ok to let go of the pain and itching once and for all. None of us will be ok without you so we will carry you with us from here on out. 

Jessica N — Rochester, New York

Praying for you Tierney and your family as well that you find comfort and peace. You have been so supportive of me and my family since I gave joined this group and shared about our son. You deserve to rest peacefully and no longer be in pain. You are so courageous and supportive. Wishing nothing but peace and love for you and your family 

Carol T — Swaffham, Norfolk, England

When I discovered this Support Group and started reading some of the contributions shared by fellow PRPers, the strength and courage shown by Tierney in the face of her many struggles and battles, I was inspired. Give up? How could I – when she showed how to face real trials! Thank you, Tierney. Bless you for being my inspiration.

Allison Mc — Erie, Pennsyvlania

It is very sad news. I appreciate Tierney’s letters that I received in the 1990s and the private message Facebook chats we had. Tierney certainly has been proactive in dealing with a rare disease. My thoughts and prayers are with her and her family.

Kenneth S — Medora, Indiana

When I was first diagnosed with PRP in January, 2017, I was introduced to this group by a fellow sufferer and very shortly thereafter I became a member and was friended by Tierney. This group has been a godsend and I’m not completely out of the woods yet although I’m much better. I have followed Tierney’s ups and downs ever since then, unfortunately hearing mostly downs. And now comes this heartbreaking news. I will always hold Tierney in my heart. She has been one of the most inspiring people I have ever known. If she doesn’t get a miracle, I hope she has fair winds and following seas on her next journey.

Diane F — Williamstown, Pennsylvania

Our biggest cheerleader. 

Colleen J — Edmonton, Alberta, Canada

Tierney of course was the first person I met with our group. She is the most positive person that I have met. Instead of being someone who is negative and cranky with us all. She is very supportive and loving and always goes out of her way despite how she is feeling. My prayers are with her and her family. Please know how much you are loved by us all. Hugs

Honora B — Liverpool, England

1996 when I had my first acute attack of PRP. I thought I was all alone with this disease, that is until I joined the email group which was very small at the time but Tierney’s name is one that was always there to help and guide me through with all her knowledge. Tierney still is here for all of us. She’s in our hearts. Love and hugs Tierney and my heartfelt thanks for always being there

Mary G — New Hampshire

I was diagnosed with PRP in 2017 and am so thankful to have found this group. Tierney’s posts were so informative for me and I will always be grateful to her. My thoughts and my prayers are with her and her family. 

Kathryn B — Stockbridge, Florida

When I think of Tierney I think of courage, bravery, kindness, and a problem solver. I’m sorry this is happening to her. You all are in my prayers.

Jill W — Duluth, Minnesota

I never understood how you could come to care about people you have never met, but Tierney was one of the first to reach out to me when I joined this amazing support group. During her hardest of times, she always picked me up. For as long as she has been ill, she thanked me for the idea of putting thick kotex napkins in socks for extra comfort. Yes I recieved an award for that idea, and Bill concurred, wondering how to put that into words on the site. It was a humor moment for me. Very tough and compassionate woman whom I learned so much from. Prayers for her, Charlie and her PRP family.

Diego T — Barcelona, Spain

It breaks my heart this new today, she help people with generosity, Tierney and Bill brought confort and knowledge to many people with this group. I’ve had PRP almost all my life, since I was 8. It was a long journey, where I felt I was alone with a rare disease nobody else had, and nobody understood. For more than 30 years I dealt with loneliness. Tierney Lynch Ratti was the first person I met with my condition, and she was 6500km away, she let me join this group and gave me the first support from another PRPr. She was an inspiration, gave me the strength to continue and the courage to help others. She made me feel I wasn’t alone anymore. Thank very much for help me, and give me hope.

Kathy D — Denison, Texas

Tierney helped me to make it through the hardest part of my PRP journey. She was always available for me to call when I didn’t think I could take one more day. Her encouragement helped me push through. Tierney you are a wonderful God sent woman with so much compassion for others. Praying God works a miracle in your life so you can continue to share your knowledge and love. Stay strong, as you always told me. You will stay in my thoughts and prayers. God has you! 

Misti B — Vacaville, California

I am forever grateful for Tierney (and this group). She welcomed me at one of the lowest, most desperate times in my life, and is always warm and kind and supportive to all who reach out on this page. Her strength has carried many of us through very difficult days.

Rita M — NO LOCATION

I was diagnosed with prp several years ago and I was put in contact with Tierney right away. She was the go to person. She patiently answered my 5,000 questions. I encountered a wonderful dermatologist in my area and he quickly put me on the road to recovery. I stayed in contact with Tierney for the next six months while I healed. I told her at one time I was using marjuana for the pain and told her I would mail her some. She laughed and said I’d probably get arrested! I told her she was an amazing woman and I treasure all of our conversations.  Stay strong Mama. Sending you good vibes!!

Martin W — Wolverhampton, England

Without Tierney I would never have got through PRP. Late night chats in different time zones on different continents, and we have continued to chat right until this recent hospital admission. No matter what her own illness caused her Tierney would put that aside to support others. This is really upsetting news I pray for a miracle and love to Tierney’s family. Tierneya totally lovely person with the kindest heart xx

Anita R — Pearl, Mississippi

I remember her back in 1997/1998 when I had PRP the first time. We were apart of the original PRP on line group. We all told our stories about having PRP and passed on to each other whatever we thought was helping us. I cried when I found this website. Reading about other peoples stories sure helped. Praying for Tierney and her family.

Traci W — Seymour, Indiana

Tierney was my first “go to” when my PRP first appeared. She was so helpful on things to try, somewhat how the process goes and would encourage me everyday. She is a God send for me! I cherish our friendship and will say many prayers for her health. Love you Tierney!!!

Frank G — Fletcher, North Carolina

As with so many of us, Tierney was one of the first, if not the very first, to offer support and empathy to me when I was first diagnosed with PRP and found this group. She has been a rock throughout, a friend most of us have never met who nonetheless will always remain our friend. Now it is our turn to support her, and I offer my prayers and heartfelt hopes for a miraculous recovery for her. If anyone deserves it, it is Tierney.

Mary-Alice F — West Hollywood, California

Tierney was the first person in the group besides Bill McCue to personally reach out and message me with words of support. We would chat sometimes at odd hours about the ups and downs of this condition. She was always so sweet to me and had such a fun sense of humor. I will always be incredibly grateful for all that support at such a very scary and lonely time in my life. Love to you, Tierney, and to your family! 

Cathy H — China Grove, North Carolina

My sweet angel Tierney you have been my friend and inspiration on this journey. I keep things inside and cry when alone to get through this but 5 minutes of talking to you lifts me up and has kept me going. I believe in miracles and you sure deserve one. I mean seriously now your skin is clear you deserve a chance to show it off. I love you to the moon and back! Charlie, Alex and Samantha your dedication and love are Tierneys greatest gift. What an awesome family she has. You are Tierneys greatest gifts and I pray for comfort for you all.

Teri R — Fort Wayne, Indiana

2017 — four months into my descent of a fiery attack on 100% of my body — I was finally diagnosed with PRP. On a hunch I searched on FB and discovered this group and an admin named Tierney. During those four months I was alone, miserable and desperate for answers. I bombarded the group with questions and comments in an effort to quench my thirst for knowledge about this mysterious disease. That’s when Tierney private messaged me. She knew all too well of my desperation and offered her unyielding support and comfort. We had long talks about everything. She was diverting my attention from my pain and discomfort during those times. I will always be grateful for her caring efforts, not only to me but all those suffering with PRP.

Marianne B — San Diego, California

Dear Charlie. We all loved your wife with all our hearts. We developed such a close bond. She was always there for me at any time of the day. When my husband passed away in 2017 I was so full of grief I could do absolutely nothing but grieve. I am so sorry Tierney that we lost touch. I will always forever love you especially for your kindness when you went through so much and not just the disease but life. Charlie, I cannot tell you what a beautiful angel you have 

Linda B — Oswestry, Shropshire, England

Dearest Tierney. You reached out to me across the miles when I was at a low point at the start of this PRP journey, and I will never forget your kindness and generosity of spirit. Wishing you and your family peace, light, love and care at this difficult time, and may your star continue to shine.

Sam H — Morning Peninsula, Victoria, Australia

Dear Tierney. I contacted you four years ago following my elderly mothers diagnosis of PRP. There was almost nothing known about PRP in Australia and I had no idea what journey lay ahead for mum. You privately messaged me and introduced yourself and gave me such a sense of hope, your words were exactly what we needed. I’m sending you love, light and healing thoughts from the southern coast of Australia

Guy F — Scaggsville, Maryland

The courage and strength that Tierney has shown over the years as she has battled the worst form of PRP is an inspiration to all of us. Thank you Tierney for the compassionate encouragement and advice that you have given to others!  

Andrea C — Colombia

Hello Tierney, from my heart in Colombia you have more than a prayer for you, God is with you, put us on this path together for this PRP, as a mother of a one-year-old girl with PRP, learned many things from the comments of all the people of this group, we are a big family and so we will always continue. Sending you a big hug, you are in a difficult situation, one more test, please let’s trust that everything that happens to us has a purpose. Hugs also for your husband and your family.

Sarah W — Dubbo, New South Wales, Australia

Tierney has been a wealth of information to me when my husband was diagnosed with PRP. I have read numerous posts where she has supported many in this group.. In Tierney’s posts on Facebook her courage and determination always shone through. I am saddened to hear this news but know that Tierney won’t give up without a fight. Charlie and her family keep talking to her she can hear you and knows no are there for her. Tierney and her family are in my prayers 

Jean C — Florida

I am so sorry to hear that Tierney is so critically ill! She is truely one very brave special lady! What a battle she has fought! Please thank Tierney for all of her kind words and help when I was diagnosed with PRP! No one had a clue what would happen next with this crazy disease! Please tell her for all of us, THANK YOU! Please know that everyone is praying for her! You Sir, please take care and thank you and your family for taking care of Tierney all of these years! Most would just run away, believe me, This is so true! You all are in our prayers also! I am just so so sorry, this is one tough.

Fernando L — Tijuana, Mexico

Tierney gave me the warmest welcome when I just entered the PRP group. I was very confused and discouraged by not knowing what happened to me, and Tierney replied to me and provided all the information within her reach. She has always been my inspiration of strength and perseverance. Sending you a warm hug with lots of love and prayers for her

Eve M — Radlett, England

I was telling my husband yesterday how even though we don’t know each other personally, we are all one family who understand what we all have in common. PRP – the pain, red skin, scratching, medication and eventually with hope remission. It’s like one of our family is suffering too much. We wish Tierney and her family strength at this difficult time .

Barbara F — St. John’s, New Brunswick, Canada

Tierney has a wealth of information that will be difficult to be replaced. I am sad to learn of her critical illness as she will be missed not only by family and friends but also all her PRP Facebook friends. Hugs Tierney. Your family must be very proud of you and what you have done to help others through their PRP journey.

Carol L — Jacksonville, Florida

I thank God every day that Tierney and Bill had this PRP group on Facebook when I had my latest flare up in 2015! Finding you all and having a place to ‘go’ and commiserate was priceless. God’s Grace and Blessings to you and your family,Tierney! Prayers for peace and love to you all.

Leslie L — Colorado Springs, Colorado

Three years ago Tierney was the one who accepted me into the PRP Facebook Support Group. I immediately knew I was not on my own!!! Tierney was there to give me hope when I was at my worst, kindness when I felt lost and confused, kindness , understanding, inspiration, and SO MUCH MORE!!! She has been my guiding light!!! She has truly been an inspiration!!! I am praying everyday for Tierney and her wonderful family!!!

Mohamad K — Toronto, Ontario, Canada

When I was in my early days of PRP, Tierney talked to me via text for about couple of hours late in the night, made me really forget about PRP for those moments. My prayers for her and her family

Kym S — Manchester, Washington

This news makes me so very sad. There is much about the human condition I simply do not understand. I am sorry Tierney has suffered. Please thank her for all the kindness and support she has given to all who endure this horrible disease. When I was most afraid her strength and courage helped me reach the next moment. Rest easy Tierney you have given comfort to so many. My best to Tierney and her family. Kym

Maria W — Cape Town, South Africa

I haven’t joined in on this group for a long time but I am incredibly sad to hear the news about Tierney being so unwell. Tierney is the mother of this group, the one who welcomes everyone, who listens, who advises, who makes herself available even if it is just to chat. Lots of love to Tierney’s family at this time. Tierney, you are in my thoughts and thank you for being you. 

Roberta K — Sicklerville, New Jersey

Tierney has devoted her life to helping those affected by this rare disease. She has shared her wisdom with many people who don’t know where to turn when, even the doctors, may be stumped. We are praying for you and your family Tierney and want to thank you for helping so many people. You are an inspiration.

Bronagh M — Shefield, England

Tierney has been my rock I was diagnosed in November 16 I found the group and met tierney she was my rock when no one understood what I was going through tierney did we chatted bout everything from her amazing husband Charlie and her two children and her beautiful grandson kane we chatted for days she was always there for me no mater what we even chatted bout Irish stew she was very proud that her daddy was Irish and we enjoyed lots of craic I love this lady dearly am praying and my family are praying very hard you have been there for lots of people from all over this world so please God help her xxxxxxx

Lisa L — Atlanta, Georgia

Tierney, when I was diagnosed in 2019 you were so kind to me and hundreds of others who suffer. Reading your candid and sympathetic words was life saving. I hope you now find comfort knowing how much we all think of you … even those of us who are not super active on Facebook.

Marianne B — San Diego, California

Tierney has been constantly on my heart. Love to you and your family. I will never ever forget Tierney. My life support during the worst times of my life. Forever grateful .

Karen A — Sarasota, Florida

Such a beautiful soul. I couldn’t have imagined not having her welcome and compassion for all of us. So selfless of herself to be here for us. Peaceful journey and will see you in Heaven.

Anita Ray — Pearl, Mississippi

I started my PRP journey in mid 1997. I was so happy to find the support group for PRP I sat at my computer and cried. From then on, I remember so many times reading Tierney’s story and the advice to us what helped her. She has always been an awesome friend. Praying

Tierney’s Global Vigil Continues

Leave a Comment

Your email address will not be published. Required fields are marked *

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.

The reCAPTCHA verification period has expired. Please reload the page.