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Judy Devlin

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About Judy Devlin

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  1. Hi Shelley, I bet Gene would benefit from this program also. Here's a link and a summary about Palliative care: What is Palliative Care Definition Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on improving overall quality of life for patients and families facing serious illness. Emphasis is placed on intensive communication, pain and symptom management, and coordination of care. Palliative care is provided by a team of professionals working together with the primary doctor. It is appropriate at any point in a serious illness and can be provided
  2. Hi Jeannie Yes yes to this "An invisible benefit of these programs (and hospice) is the relief from responsibility they give our families and friends" And for myself living with two 80 year old parents, having a regular nurse etc., walking into the house on a regular basis also is like help for my parents. An extra pair of eyes so to speak. Many of the OT's tips I pass on to my parents so its such a big win for all of us. I was 'retired on disability' before both my parents retired and have felt that I kind of showed them how to be retired happily etc., routines, hobbies, living in th
  3. Hi all, Long time since I've posted, but I just have to share this wonderful program that I asked my new primary care physician about- Palliative Care. I have had CREST since 1991, although my symptoms started twenty years before that. Like many here I've seen dozens of doctors, specialists etc., only to be given more tests more drugs all while knowing there is no cure. Well after a stint at Duke Medical University with the best vascular surgeon there to help heal or amputate a finger with possible by-pass, which was not doable, I was told there was nothing more they could do for me unless I w
  4. We have just posted Mars' story on the main sclero.org site and invite you to read it: Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success...
  5. We have a new story on the main sclero.org site, in loving memory of Sonya's mom. Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue...
  6. Bren: CREST Scleroderma I had three ulcers on my hands from Raynaud's. I had Botox injections for them, and by the next day they were gone...
  7. Jules story is now posted on our main site. Jules: CREST She has left me with no answers or expectations and I'm afraid my obsession will only aggravate my symptoms...
  8. Rebecca's new story is now posted on our main site. Rebecca: CREST, Fibromyalgia, Sjogren's and Pulmonary Hypertension My finger has gangrene and the hand specialist says it needs to look like a mushroom before they will amputate...
  9. Vivi: Facial Scleroderma (Linear/Morphea or Parry Romberg's) Hello, my name is Vivi and I have had facial scleroderma since I was seven years old... (Español/Spanish) Vivi: Esclerodermia Facial (Lineal/Morfea, Parry Rombergs) Hola, soy Vivi, tengo esclerodermia facial desde los 7 años...
  10. We have posted Joyce's new story on our main site: Joyce T: Scleroderma with Pulmonary Hypertension My pulmonary doctor ordered a medication for the pulmonary hypertension (PH) but my insurance denied it...
  11. Did you know the sclero.org site has a following all around the world? That's because we have content in 23 languages and many stories in foreign languages. Here is Emy's Spanish story, which was translated into English by ISN Translator, Alba Leon. Emy: Localized Scleroderma Hello! My name is Emy and I am twenty-six years old. When I was nine I noticed a small lesion, the size and shape of a coin in the temporal side of my skull. As time went by I began losing the hair in the area. I thought I was going bald, so I decided not to push it further, nor ask my parents... (Español/Spanis
  12. Did you know we have a collection of over 1,000 patient and caregiver stories on our main site? Many of them are submitted in foreign languages, and then we translate them into English. This story by Maria D was translated from Spanish to English by ISN Translator, Alba Leon. Maria D: Localized Scleroderma My name is María. I am the mother of a seven year old boy who was diagnosed with this illness. When the dermatologist gave me the diagnosis I had no reaction, since I didn't know what it was really about... Maria D: Esclerodermia Localizada Mi nombre es María,. Cuando el dermat
  13. Kamlesh: Husband of Limited Scleroderma Patient I am narrating the story for my wife, who has scleroderma which started seventeen years ago. I was very worried about her health as her skin color and consistency was changing. She was getting weaker day by day. I tried to get her diagnosed in every place of India but as it was in its initial stage no one was able to diagnose her...
  14. Have you considered posting your patient or caregiver story on the sclero.org site? Read our stories and if you feel inspired, submit your story as well. Tatita's story has just been posted in Spanish and English on our main site. Tatita: Morphea (Puerto Rico) I am thirty-seven years old. A year ago I had gallbladder surgery, and after the procedure I began to experience back and arm pain, and sometimes strong headaches.I am thirty-seven years old. A year ago I had gallbladder surgery, and after the procedure I began to experience back and arm pain, and sometimes strong headaches...
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